To Know Is To Love

Candles light up the memorials of the victims of the CT shooting.

I, like you, have been staring at the television the past few days trying to organize, file, and store the tragedy that occurred on Friday morning.

There are no words...I wonder how many times that has been written on the internet the past few days. Or, "our hearts go out", or "condolences"... We try to form sentences to say, but we cannot. 

Just this morning, I read a post from a mother who struggles with a son with violent tendencies. Her blog post can be found here.

It is a poignant, open, and honest column about the real life struggles of what some of us live with as we deal with children who run against the grain of life. I was so glad to see this woman (who seems to have a big following) have the courage to show her 'underbelly'. 

I do not want to speculate on unknown facts surrounding the motive of this shooter. I do not want to try to piece together what may or may not have happened in the life of this guy or the life of his mother. From all accounts, it sounds like his mom was just like me- just living life, having friends, decorating for Christmas, making dinner, checking off her list of stuff she needed to get done. 

I bet she did not have this ending written down. She would have never known the evil capabilities of her son. A son that, in her mind, was someone she loved- maybe to her he was just her quirky, little guy. We may never know.

With all the talk on the tv from 'experts' and pundits about blame and what is happening to our society, I began thinking about what my responsibility is in this life. What am I held accountable for? I am responsible for myself and the actions I take. And, I am responsible for my two boys. The government is not responsible for us, we are. The organizations I am a part of are not responsible for us, we are. 

I, too, have a son that is different from most of his peers. He has difficulty making friends, social interactions are forced and hard, and his capacity for empathy is severely lacking. It took me a few years to accept this realization, but I had to. Because, he is my son. He belongs to no one else on this earth but me. 

And part of that responsibility piece is for me to know my son to the best of my ability. Some days it is difficult to know what in the world is going on in that little head of his. He is fascinating and curious. He is difficult and lovable- many times all at once. He is quirky, funny, but sometimes he is downright mean and abusive. 

Some days I feel like the worst parent in the world, and other days I shrug my shoulders and say, 'only by the grace of God go I'. But, my guess is that most of us feel that way. Sometimes we are high-fiving ourselves internally (or externally, which looks really weird), and other days we are bludgeoning ourselves with shame and doubt. 

But, it is most imperative that I know my children. There are sometimes two different rule books in my house- one for Walker and one for Liam. This may seem unfair to the outside world, but I have learned that I must parent these two very differently. My son Walker is allowed to play video games with warcraft in it, and Liam is not. Liam is 'allowed' to be a picky eater at dinner time, and Walker is not. At one time, Walker was allowed to have a smart phone/iPod, but now neither can have one until they are on their own. 

These are a few of the working rules in our household. For now, they work. But, I may have to be willing to change directions at any given point in time. 

One of the hardest things to do as a parent is being willing to admit that our children are capable of great evil. Who wants to dwell on that???!! NO ONE! 

We all have these skewed views of our precious, little ones. 

"Not my little guy, nope, he is the most generous, tender-hearted one of the bunch."

"REALLY? Because I just saw your generous one give a generous shove to my son on the playground."

Yep. This is a tough one. I don't want to admit that my kids are capable of evil because I believe they are an extension of me. And then, I would have to be willing to look at the evil in my own heart. All the little murderous things I do in my own heart when someone pulls in MY parking place. Or, when someone (as happened yesterday) cuts me in line at Target. Or, when a friend calls to share about her ex-husband's mind games, I am thinking of people that could break his kneecaps. 

I won't go on and on. You're a smart bunch. But, as the woman said in the aforementioned blog post:

God help me. God help [her son]. God help us all. 

'Tis the Season to Share the Diagnosis

So...Liam got sent to the principal's office yesterday.

It seems that one sweet little girl got her name called during the announcements for winning a character award that Liam did not win. This was, apparently, unacceptable in his mind, so she deserved to have a few school supplies missing from her cubby when she got back from snack time.

Poor guy. In Liam's eyes, life is just not very fair. He doesn't understand why sometimes his name is called to win a character award (Perseverance three years in a row-can't say he doesn't deserve THAT one!), and why sometimes other people's names are called.

I've tried to explain sometimes you win, sometimes you lose. I think I've even sung Kenny Rogers "The Gambler", but nothing seems to make sense to him. And, if I stop to think about it, to explain this concept is pretty difficult. It is very abstract- something that Liam cannot categorize in his mind full of folders and filing systems.

What he understands are things that are never-changing and constant. Like concepts of math and grammar, and the news anchor, Holly Thompson, at 7:27am on Channel 4 news. And, like whenever he says, "But, mom, I don't want to do that," I always reply with, "Too bad." (Sometimes when I don't say, 'too bad', he asks me to say it just so all is right with his universe--- I wish I was kidding.)

This poor little girl probably got really upset by the fact that Liam stole her goods. But, I know she understands the big picture.

I know this because every year I go into Liam's classroom and give a little presentation about autism. I tell the class a bit about how the brain works and how Liam's brain works differently than theirs. Many times they will ask questions about Liam and his behaviors. We usually do it when Liam is pulled out of the classroom for reading, so his classmates feel the freedom to ask the sometimes tough questions.

Some of you may question my reasons for doing this. Don't you want him just to blend in with his peers? Don't you want him to feel as 'normal' as possible?

Cerebral scan of autistic brain.

The answer to these questions is yes. Of course. I want Liam to feel welcomed, loved, and admired by his peers. And, that is why I choose to do it this way.

I have found that the more information people have, the more equipped they are to have empathy and understanding for the situation. I can see the lightbulbs go off in these children's minds when they start to understand what Liam is going through.

The fact is that Liam is not 'normal'. He doesn't behave in appropriate ways a lot of the time. He's getting better, but it's not missed on the other children that he is sometimes talking to himself or laughing out loud when he shouldn't be. But, the other tricky part is that Liam also doesn't 'look' the part of an autistic or special needs child. He does blend in at first with his peers, and if you are not looking for symptoms, you might not notice.

But, that can become problematic when he does break a school rule and gets a consequence that may look different than what the other kids get. If he throws a book across the room, he might be asked to simply take a break. If these kids did not know his condition, they might begin to hold him in contempt. "Why does he get special treatment?" "If I did that, I would lose all of my recess.""Hey! That was a perfectly good book!"

I did this when we played baseball (or attempted to play). I sent an email out at the beginning of the season explaining Liam's condition and that I would appreciate their patience. I was amazed at the compassion that the parent's had on Liam, and even that they would explain things to their own children about learning to cooperate and being patient with others that are different.

Being open and honest has worked for us. I know there are some families who choose not to be open about their child's diagnosis, and that is okay too. But, it seems that when I am comfortable with my son and autism, everyone else seems to relax too.

And, hopefully, these trips to the principal's office will be fewer and farther between. Mr. Parman, our school's principal, is a kind and patient man and has watched our little Liam grow up leaps and bounds over the years. He admitted the other day that he will be really sad when Liam and his ever-present light leaves his elementary school next year.

Liam with two of his buddies. So sweet!!

And, I may be packing up my art and presentation supplies with Liam headed to middle school (yikes!) next fall. I haven't decided yet. We will have to see if the need for information and the uncool mom will outweigh the need for space and independence.

If the latter happens, that's one opportunity that being uncool will be just fine with me.

Road Trips and Tryptophan

Whew! So, you made it through! Round one of family gatherings, tryptophan, over-eating, and endless road trips. Pat yourself on the back for that one. No, seriously! 

Family gatherings and autism do not necessarily go hand in hand. For one, we are completely off any sort of routine. And, we are scrambling on Turkey Day to find something for little junior to eat since we all know he won't even begin to touch anything on the buffet line. I think one year I ended up feeding Liam peanut butter crackers. Just hand over the "Mom of the Year" plaque for that one. Oh, and he probably ate all of the Sister Schubert rolls too! Guys, there's totally like 5 grams of protein in one of those six pack of crackers, right?

Honestly, I am grateful I have a family of which I can let my hair down. My precious Grandmother let go of the fact that Liam wasn't going to eat any veggies a long time ago, and things have been pretty smooth ever since. My family also gets quite the kick out of him like I do. They love quizzing him on everyone's birthdays and birth years. And, this year, they set up a basketball goal that allowed him to 'dunk' away any anxiety that may have crept up with all the people that were there. 

Papa Walker- Warning: He is always looking for free hugs!

'Gran' Walker- isn't she cute?

I come from a huge family. Every second Thanksgiving the big Walker family gets together for our dinner where we celebrate Christmas and Thanksgiving together. We had to do this out of necessity since there were so many of us (I think there are almost 50 in just the immediate family). Sure we put the 'fun' in dysfunction like every other family, but for the most part, it is pretty enjoyable. 

And, having understanding family members is key! 

If you are one of the millions of immediate families that have autism in your clan, being a sympathetic person can be a lifesaver during the holidays. These parents do not need lectures or suggestions. They just need a safe place that they can take their child and let him/her be whomever they need to be. 

Sometimes this is the hardest part! We all have expectations for our children and family members. We want our kids to act a certain way when they open a gift, or to be nice to someone they hardly know. ("ooohhhh, say thank you for such a nice gift" or "give aunt so-and-so a hug") But many times our kids don't want to be touched. Or, they may announce "Mom, she got me the same gift that you got me last year!!" 

****head in hands****sigh!****

This is a portion of my crazy family from 2009. Again, 'fun' in dysfunction.

The best moments are when everyone just kind of happily ignores the rude comments or the freak outs. Or, even better, looks at you and says, "hey, I got this!", and takes your little one out to shoot hoops. 

And, as parents, we need to be better about asking for what we need. Our family members cannot read our minds. And, if leaving a few minutes after dinner to go home is what is better for you, then do it. Or, if stopping by KFC on the way in to bring a bucket of chicken because turkey and dressing is NOT on the short list of foods they eat, then let the Colonel in. 

Communication is everything, and once people understand what you are going through and what is most helpful for the family unit-- folks begin to get on board to help!! 

This year, I had to drive from Tennessee to Florida and back up to two different cities in Alabama somewhere in between. As Liam was kicking my seat and backseat driving--("Mom, why are you going slow???" "I will freak out if you let Grandmama beat us!!") I actually thought to myself, "you know, if Liam were not in my life, it would be so boring!"

Yes, I would have more peaceful road trips and less gnashing of teeth, but I wouldn't have his light. 

"Liam, you light up my life, do you know that?"

"Yeah, I know."

Of course, he does.

Siblings Matter Too

Good morning, readers! I only put one exclamation point because I am NOT a morning person. There is only so much enthusiasm I can take in the mornings. You can bet that Liam's feet hit the ground running when the day begins. For years, he would barge into my room-quite literally-announcing his presence with, not a "good morning, mama", but a "(annoying whine sounding like a shortened ambulance siren)...MOM, GET UP!!!! GET ME SOME BREAKFAST!!!" 

And, I am sure that you can imagine my less than enthused response to this assault on my sleep and my morning with a sigh and a disgruntled look on my face. Eyes half-closed, breathing heavy, limbs not fully functioning yet- "MOM, Why don't you look happy??!! LOOK HAPPY!!!!!" 

This is where I perfected the fake perma-grin- no teeth, just a plastered smile, with my eyes still closed. From this point, I go through the motions of shuffling feet into the kitchen to pour a bowl of cereal, put it on the table, crawl back into bed, and pray that he would eat his cereal slowly enough to give me ten extra minutes of sleep. 

It IS hard to be mad at this face for TOO long! What a smile that boy has! 

Sometimes I wish I was a morning person, but,... alas, I am not. I long to be one of those people who slaps their knees when they get up and can't wait to tackle the day and whatever problems arise. I wish that the world and work day didn't really start until 10am. This seems reasonable to me. Leisurely starting the day at 8am, slow drink of coffee (I am picturing the Folgers commercial with the woman staring out at the sun coming through the window), the kids come in around 8:30-8:45-very slowly- giving me a big hug and kiss, "mom, how was your sleep?" Because I have had this quiet time to myself AND a full 10 hours of sleep, I am sweetly humming to myself and whipping up blueberry scones and fresh squeezed orange juice. "I'm such a good mother," I think to myself. 

Nope. This is not our life. 

And whoever the genius on the school board that makes the older kids get on the bus at 6:50am is clearly one of you morning people. (said with disdain and judgment)

I know, I know. My utopian dream of late start mornings is just that--a dream. But, this is why we all need each other. Our differences are what makes the world go 'round. I just happen to think that night owls like me are better people, in general.  ;)

I wish that I could operate a giant fader, like on a music console, that slowly fades the day in. 

Speaking of sleeping in, my oldest son, Walker, is a sleep champion. If there were awards for longest sleep, deepest sleeper, and least likely to be awakened by a nuclear crisis, these would be bestowed upon Walker. On Saturdays, I feel like I am being abusive by making him get up before 11am. The amount of effort it takes for him to put his feet on the floor is astounding! How many of you mothers use "Feet on the floor!" as your code for, "don't make me ask you more than two times to get up!" It is probably a scientific fact that 'feet on the floor' is the only way to ensure that these people will get up. Even turning on the light and ripping the covers off are not adequate for getting Walker up. 

The Professional Sleeper at work! 

On a side note, a friend of mine's dad used to wake up his 5 boys (ay caramba!) with water guns. I haven't tried this yet because it would require too much thinking and assembly in the morning. But, it intrigues me nonetheless!

So, yes, you can just know that whatever child you were born with first- whether they are easygoing or difficult, the second child will be the complete opposite. Walker was born with the most calm affect you have ever seen. As a baby, I would bring him to restaurants with me and a friend, and he would literally sit and just look around- completely content to just hang out. It was ME in a male, baby body!! 

(I have often said that "hanging out" is my spiritual gift)

I remember having one mother so alarmed by his calm-ness that she suggested I have his hearing tested. 

He is still that calm, easygoing guy. So, you can imagine when Liam hit the scene- our calm, little world was turned upside down!!! (easy does it, almost too many exclamation points)

I thought I would talk a little bit today about the siblings of our autistic children. So much emphasis has been placed on the research and the autistic children themselves. And, rightly so. The research is going to be the thing that hopefully changes the diagnoses and ultimately our lives for the better. And, there is a lot more information on the autism itself which helps the public understand what it is all about. 

But less understood is the role that siblings play in the care-taking of these children. These kids have to grow up so fast. They are not allowed to have their own needs and concerns because they live with an autistic sibling that overshadows them. 

It has also been hard to watch sometimes as Walker longs to have an emotional connection with his brother. But, by the very definition of autism- emotional connection and empathy are qualities severely lacking with these children. Many times, Liam will want to 'bond' with Walker by being rough and tumble (sounds like normal boy stuff), but he lacks the social and emotional cues of when it is okay to be rough and when it is just not. 

Or, as in the recent season of Parenthood (NBC, Tuesday nights, 9pm CST), when Haddie leaves for college, all her autistic brother can do is play with his toys in front of him and not look her in the eye. It is heartbreaking to watch (I wept!) because it is exactly how it is at home. Haddie feels unimportant and devalued as she has been a huge advocate for her brother his whole life. (If you are not watching this show, stop what you are doing and start from the beginning- the portrayal of Max, the younger bro with ASD, is quite accurate!)

Haddie (left) with Max (right) as they go to a dinosaur museum. Haddie didn't want to go in the first place, but went to make her parents and Max happy. Watch this show!! It's amazing!

Most of the time, as normal siblings get older, they can set aside their "annoying-ness" and selfish agendas to realize when something greater is going on. If an older child is leaving for a mission trip or camp for several weeks, other siblings can rally and give a somewhat meaningful hug, fist bump, or SOMETHING. But, kids with autism will almost seem numb and unaffected to what is happening. 

Or, another example would be if Walker is clearly upset by something happening in his world, it's probably not the best time to gut punch him in the stomach because he walked in front of the TV. 

These siblings expect there to be conflict. What brother and sister don't fight?? But, this goes beyond the normal scuffles. These sibs have to be patient and long-suffering. They are forced to see a bigger picture that is difficult for us to do as adults, much less when you are an adolescent. They must learn to deal with the meltdowns that occur when you are trying to do something 'enjoyable' as a family. 

There have been many times when I have had to look at Walker and say, "I'm sorry, but for the sake of the peace and harmony of our family, you will need to give up what you want right now for Liam." Almost all of the time, he will concede defeat and give up his cause for the greater good. 

Things have gotten better over the past year or so. I think Liam is maturing. But, that doesn't stop him from slapping Walker's brand new glasses on the floor, or yelling, "HEY, WHAT ARE YOU DOING, GET AWAY FROM ME!" when Walker is just simply walking outside of Liam's room. To say that these siblings walk on eggshells is an understatement. The kids with autism didn't ask to born with their diagnosis, and the siblings didn't ask to have a brother or sister with autism. And so begins the difficult task of wrestling with hard issues early on in their lives. 

Like anything in the realm of the complicatedness of life, people will say that it is good for them. They'll say it's good for these kids to realize that the world doesn't revolve around them. And, I would agree with that. These siblings have a greater understanding of what suffering is and is not. They have a deeper capacity for empathy. I tend to think Walker may make an amazing therapist one day. I will let him decide for himself what he wants to do, but God may just use him in the lives of others because of what he has had to go through. 

But, I want to make sure that we don't take these sibs for granted. These guys need a break from it all. Make sure you are taking time out for just them. Ask them to talk about what it feels like to have a bro or sis with ASD. (autism spectrum disorder- in case I haven't said that before) Ask them if they feel like they need to be heard sometimes. Make sure they have another safe place to go if things at home feel like too much. You don't want them to feel as if they are in a pressure cooker that cannot be turned off. Much like us mommies and daddies, they want to know that someone cares about them and they don't have to carry this huge weight all of the time. One family I know takes their vacation time when their son with autism is away at a special camp for a month. You have to do whatever it takes to get your sanity back.

Walker and I watch Parenthood together. We haven't talked specifically about it, but I think it makes us feel normal. We will make knowing looks at one another when something with Max happens. And, we feel genuine excitement and relief when the parents of Max have a small victory with him. 

Other times, jokingly, Walker will refer to "our son" as in, "Mom, our son is getting in trouble outside with the neighborhood kids. You may want to deal with that." We will laugh, and I will say just add it to the counseling bill that is inevitable to follow. 

The point is, let's not forget about these little super heroes. Go give them a big hug and tell them how proud of them you are. Or better yet, text them a sweet note or leave one on their bathroom mirror. If they are teenagers, they will likely not respond in kind or at all. But, they will not forget it. This will make their burden just a little bit lighter- if only for a moment. 

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.

Happy Autistic Halloween!!

Happy Halloween to you all today! I absolutely love this holiday because it gives my creative side a little boost to be able to think about a costume. I got wacky this year and made my own costume (which NEVER happens!). But, after spending $30 on Liam's costume, the purse strings were a little tight. I mean, that is the downside of Halloween. The older they get, the more the costumes cost. I haven't broken the news to Liam that he is right on the cusp of being too old for Halloween. I'll let you know how that convo goes later!

So, I'm curious to know how YOU have survived Halloween in the past? I know with kids who are NOT autistic, Halloween can be a hellacious time of pre-diabetic sugar rushes, costume meltdowns, and anxiety. So...how does your little one handle it?

I don't know how we have managed to come out relatively unscathed with Halloween. I think the biggest issue has been more about the costume than it has been about doing the actual trick-or-treating. I am always grumpy about spending a ton on a costume that will be worn only once. (a little of my daddy comin' out on that one) So, of course, Liam will try to pick out the costume that has a lot of bells and whistles or requires an oxygen mask to wear it. I have learned that I have to give him a number of what I am willing to spend BEFORE we get to the store. Sometimes concessions are made, but for the most part, I try to stick to the plan.

This year was a bit different. He began saying in August that he wanted to be a storm trooper for Halloween. I was like, "yea, how hard can that be? They have those available every year."

Well, apparently they do not, and certainly not when you wait until the last minute, which of course is the Saturday before Halloween being the following Wednesday! Which, for this girl, who does not like to plan anything in advance, that is a ton of time!

(retailers are mocking my words right now)

We did not find the storm trooper in his size, but I was able to convince him that the other star wars character was AMAZING! And, when he saw the mask, he agreed. But, when he got home and realized that just because something is pictured on the outside of the costume package, this does not ensure that it will be actually IN the package, he was less than thrilled about that one.

When everything is literal to these guys, you cannot expect to put an awesome-looking gun on the outside and not expect a downright riot when the accessory is not included.

This was when, in one of my more brilliant moments, I explained to him that the gun was indeed included in the costume, it was just painted on the forearm. He bought it, and the crisis was averted.

The other thing I have found helpful is to have some sort of plan of action for the actual houses you will hit up on Halloween. The nice thing about Liam is that at one point in time (I cannot remember when) I told him that he would only have to go to 10 houses for trick-or-treating. He has stuck with that plan for some time now. Ten houses. That's it.

Sometimes I feel jipped. I'm thinking, you have a costume, and you don't have ANY of the candy I like to eat, so let's get this party started!! But, once we've hit ten, he's done. And, that's okay too because it's usually freezing anyway.

But, back to having a plan. Remember I am a 'P' on the Myers-Briggs. And not just a moderate P, I am full-blown Perceiver. Like it feels like torture to have a plan. I like to see how I feel in the very moment we are doing something. SO, you can imagine all the ways I have had to concede in my life. If there's no plan, somebody's gonna blow their top!

Many times this just ends up being me grabbing a notebook a little bit before we go out and drawing him a map of the street where we will be going. Obviously I don't know all the houses that will actually be participating in Halloween, (or the ones with good candy :) but even just making it look like I have a plan makes it better than winging it.

We have learned to avoid the jokester dad who dresses up like Jason every year and thinks it's cool to stare down the toddlers who are innocently walking by.  Jeez! Some people!  He is obviously living out some childhood fantasy that his mother never let him take a part of. (and for good reason)

I have also learned to give up what my expectations are! Oh isn't this the life of a parent with an autistic child!! We have to temper the things that we wanted our children to experience. And, many times, this becomes the source of grief- which, is more about us than it is about them. Sometimes, it might be just okay if they stay at home. Maybe they want to open the door for the neighbor's kids. Maybe they don't. Maybe they just want to sit and play the video games they have been playing for years. This is tough. Because sometimes you just want them to do what everyone else is doing.

And this is a crossroads. Will I let their lack of interest affect the way I enjoy the holiday? It's okay to be upset and disappointed. And, maybe this is the one night of the year that you make a grocery store run to get a bag of Reese's- for yourself!

Try to be kind to yourself and your child, adjust those expectations, and enjoy that bag of candy like it was the last bag of Reese's on earth. And, then, you can laugh at all the parents who are freezing who wish they had their own stash of Reese's!

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. 

The Tao of Autism

It has been a few weeks since I posted anything. I have missed it. I don't really know who is reading this (apart from my sweet friends that I force feed my blog upon), but it looks like quite a few of you are checking it out. So...thanks! I know there are a lot of bloggers who are much more proficient at writing than I am, so I am honored that anyone would take time out to read it. I would probably put my 'writing' in air quotes. But, if you do enjoy my blog at all, more than likely it is not because you are an English professor.

I was thinking about all of these years of dealing with autism and the various ways I have managed it. Because that is all we can do. There is no cure- it is all management. And, unfortunately, for both me and Liam, management is not my strong suit. Sometimes, though, I think if I were any more rigid, Liam would begin to expect rigidity all the time. And, let's be honest, most of life is not very rigid. Much of it is out of our control-people, circumstances, whether a football team wins or loses- all of those pesky little things we would love to control, but sadly cannot. 

And, speaking of football teams winning or losing, Liam does not sit well with that little abstract concept. Sure, you might say, "oh my son comes home and cries if his baseball team loses," or, "my husband is in a bad mood if his favorite team loses a game." I would simply look at you and smile and say, well, that's probably a normal reaction to a very common issue. Take your son's crying episode, your husband's bad mood, and go ahead and add an element of nuclear explosion to that mix and that would give a slight hint at what happens when my son's teams lose a game. 

This started very early on in his life. If someone won the Thomas the train race or a quick pick up game of UNO-Beware! This seems to be a fairly common trait in autistic children, and I am not really sure why. My theory is that it stems from the fact that with autism there is not a ton of empathy (scratch that, none!). These kids simply cannot see outside of their needs, wants or desires. Much like a toddler (or teenager) that never fully grows out of it. 

So, if their desire is for their team to win, then it must be so. It doesn't matter how many times you have "explained" this concept. ("We must be patient when our team loses.""What do we say to the other person who wins?" "That's right, we say, Congratulations!") They continue to react the same way. 

I signed Liam up for baseball for a season or two. Thankfully, the first season, his team was really good and tended to win their games. But, his second season...not so much. I decided that a team sport was not for us when he threw a metal water bottle at his teammate's head because the other team scored several runs. Or, yes, the horror and embarrassment I felt when he yelled at me in the stands through the fence in the dugout that he would smash the other team's players with a hammer. 

"Honey!" heh, heh,...(sheepishly looking around at the other parents)..."we don't say that!" "Honestly, I don't know where he picks this stuff up." ...clearing throat..."Hey, I think I smell hot dogs at the concession stand!"

And, this concept doesn't just apply towards the games that my son plays himself. This goes toward the teams he is remotely associated with. My oldest son, Walker, is in the marching band at his high school. The football team has had a less than stellar season, and one particular game was looking pretty ugly by half-time. 

Liam was huddled in an awkward ball in the stadium, wailing, (fairly loudly, I might add) about how he wanted to go home. I was on pins and needles not knowing if he would lash out at me or some innocent by-stander. I feared the worst. And was going to be pretty angry if I was forced to miss my other son's performance at half-time. 

Then it occurred to me! Yes! Just maybe...maybe it would work. Liam loves football. His current favorite obsession is to run in the open field across from our house and make 'long' yardage runs into the endzone. Hours he will spend pretending he is the star player running down the sidelines. (and oddly enough, he wins EVERY time!) 

"Liam, IF you can pull yourself together and behave the rest of the game, THEN I will let you run for touchdowns after the football game on the big field...the REAL field!!"

I waited with bated breath to see if my proposal would work. His teary eyes looked at me in disbelief. "What is this?" he seemed to ask with his eyes. 

"Yes, the team will leave the field and you can run down the sidelines ALL by yourself."

It worked!!! He sat up, breathed a deep breath, and held himself together for another solid hour and a half. 

I had used two key words that worked- 'if' and 'then'. Two of the most powerful words in the autism world. They are indisputable. They are black and white. If you do this, then you will get that. And, if the 'then' is motivating enough, it works like a charm. It is the Tao of autism. 

"If/then" was introduced to me several years ago and changed my life. I had to at first give myself the permission to use them and not believe that I was somehow bribing my child into good behavior. But, then I realized, what the freak do I care?! I want good behavior. I want sanity. And, today, this is what works. 

The football team took a hard couple of licks that night. But, not us. We won. I got to win, and Liam got to win. And, IF I could get Liam to do what I asked for just this once, THEN it would give me the hope to wake up and do it all over again the next day. 

Love the 'if/then', embrace the 'if/then', make friends with it, and you can win too.

(Here is Liam's triumphant victory!)

There IS a Difference Between Nuggets and Tenders

If there was one bad human behavior I would take away, I think it would be judgment. Yes, murder and rape and torture are up there too, but judgment...this is what kills relationships.  We have come a long way on this journey/pilgrimage/bootcamp of autism, and when I say 'we', I mean, Liam and me, but mostly me. Because I have had to swallow a lot of pride and a lot of judging others. 

I can remember a family who had four children and they would prepare four different meals for their kids because they were all picky eaters. "Not me, I'll never...." Cut to me frantically making Liam his own meal every time we eat, even going so far as to pull into two different drive through windows if what they are offering on the menu is not to his liking. Shoot me. 

This is what I found in my bed the other night.

"I will never _______." Aren't those the words of death? Don't ever say these words- especially you new parents. Because oh!  You will, and then some! You may soon learn that there really IS a difference between chicken nuggets and chicken tenders! Again, just... blow dart to the neck- quick and painless. 

But, let's really think about it. How many of us have judged that woman in the grocery store smackin' her toddler's bottom in the aisle because they won't quit whining about the sugar cereal (that is strategically placed at their eye level)? 

Or, the lady who is calmly pushing her cart with the child who is screaming bloody murder in the seat. "She is just blatantly trying to ruin my day with all that screaming. Ugh! And, look at her, she's just staring at the laundry detergents. PICK ONE, LADY, AND GET THE HELL OUTTA DODGE!!" Truth be told, that mom is staring at the detergents thinking about the cocktail or two she will be making when she gets home. She has probably checked out a long time ago and the screaming is white noise. 

The minute you make these little judgments in your head, you will find yourself the following week leaving an entire cart of groceries in the store with your little one hanging on your arm like a maniacally, swinging monkey, kicking yourself for not remembering why you don't bring your kids to the grocery store in the first place. 

We all do it. We judge others. And, it's so ugly. Especially when the judging is being done to you. 

My child was the one who kept getting kicked out of preschools because of his aggression. If you knew me, you would know that there is not really an aggressive bone in my body. I am a peacemaker- in my family, friendships, and even to the door to door salesman that I can't seem to say no to. So, to have someone call me up and tell me my child is no longer welcome at their sweet, little church's mom's day out is horrifying. 

This came at a time in my life when I needed those breaks so desperately. We had not quite figured out exactly what diagnosis Liam had and I was at a loss as to what to do with him for 8 hours a day. Life was stressful and I was hoping that the structured environment of a school setting would help both him and me. I went in to meet with the director and quickly became a puddle. She felt compassion for me and decided to give Liam another chance. 

"He can do it. I promise."

The next day, he decided to hit the demure, little blond girl because she was 'looking at him'. Ironically that day they were learning the Bible verse, "I can do ALL things through Christ who strengthens me!" (eeeeehhhh...let's ease up on the strength...you've got that covered, Liam!)

On that day, I remember walking in to pick him up early and seeing some of the mothers huddled around. As soon as I walked by, it was just like the movies, their hushed whispers stopped and as soon as I was out of (what they thought) earshot, they said, "that's his mom." Like I needed a scarlet 'M' around my neck. "He has a problem. You don't understand. I'm not a bad parent, I promise." These were the things I wanted to say, but I knew they wouldn't really get it. 

A year later, I was confronted by several friends in my group that told me that they were concerned that I was not doing anything to help Liam and his aggression. Several of these friends had girls and they genuinely feared every time we got together that Liam was going to lash out at them. And, looking back, I can't say I blame them. He was out of control, and I had tried all I knew to do at that point to help him. 

But, something shifted in our relationship. I no longer felt their support and love. I felt judged by them and found myself staying away from our play dates and get-togethers. 

Thankfully, things have turned around. Liam has learned a lot more self control. But that has not been without hours and hours of therapy, ABA, tears, screaming, giving up, and getting back up again. And, at times, I am mentally walking on eggshells when he goes to play with others in the neighborhood. I cringe when I see a parent walking towards me waiting for them to scold me for something Liam has done. 

This fight is a lonely one. And, many will judge you when they absolutely do not know the whole story or anything that is going on. It is unfair, but we cannot say that we have not done the same. And sometimes, I have found myself looking at someone who seems to be judging and saying, "I'm sorry, my son has autism. I hope you understand." And, a lot of times they do- especially once they know the whole story. It disarms and can bring empathy to the situation.

The quote that comes to mind is the famous one, most often credited to Ian McLaren,

“Let us be kind, one to another, for most of us are fighting a hard battle.”

Bringing Back "The Worm"

I was thinking today about all the various people that have helped me throughout my journey through autism. Some would say it takes a village. In my case, I believe it takes an entire continent. I do not know where my life would be if it were not for the various people who have helped me along the way-whether I paid them to be there, or held them for ransom until they did help me-either way, I am forever grateful.

One person that rises to the top in my mind is one, Hunter Gast. I have not even asked her if I can publicly ode her, but...well,... too late! Hunter came to me when I received a recommendation for HOPE Autism and Behavioral Health Services in Franklin, Tennessee. She was a new behavior therapist there, and she came over for a consultation. She came at one of my most desperate points. I think just that morning I had witnessed, what we affectionately named "The Worm", which was the sort of tantrum that Liam would throw that was so strong his body would contort into the popular 80's dance. Most of the time I did not know whether to laugh or cry. Sometimes, if the day had been really bad, I would just sit on the floor next to him and cry myself. I would have no where else to go with my frustration but on the floor. So, I would do "the worm" too. 

So there I was, tear-stained face, looking at this young twenty-something to save me from my situation. In my head I thought, "what does this cute Vandy grad know about my kid?" But as the weeks went by, Hunter thoughtfully, and sometimes bluntly, whipped us into shape. She saw the many patterns that Liam and I were in. The other dances we did together. Unlike "the worm" which is pretty much done by yourself, we were moving in unhealthy patterns of dance with me being worn down, giving into his desires, and him not learning how to overcome the idiosyncrasies of his autism. Liam and I knew our steps well and we needed a professional to get us out of them. 

I think the day that sealed the deal with Hunter and her commitment to us was when she received a swift kick in the face from Liam when she was (how dare she!) trying to get him to put his shoes on. She later called me that day (like a certified gangsta) to report that she indeed had a hairline fracture to her nose. I think that I would have politely turned in my resignation at that point, but this made Hunter's resolve even stronger to see Liam become all she knew he could be. 

(Liam looks like he's ready to do "the Worm" in this picture)

Do you have a Hunter in your life? I hope you do. We need all the support and resources we can get. And, the good news is that with all the publicity on autism lately, there are more and more people out there willing and trained to help. I highly recommend ABA therapy, which is what Hunter is certified in. It is the single most effective treatment that has gotten me through some of my worst seasons. So, if you find your little one doing "the worm", the "challenging cha-cha", or the "terrifying two-step", call in for back up! Get yourself another dance partner!