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!

Hairspray Is Hazardous

It's Sunday and this is always my hard day. The day that God meant for rest ends up, inevitably, being a hot mess. I think the devil must have a heyday. I can just see him now, clicking his heels, pitchfork in hand, whispering to my little guy, "go for it, she's worn down. It's totally fine to eat Instant Breakfast right out of the canister with a spoon in her bed. She's too tired to fight it!" And, sadly, I am too tired. And, finding sandlike chocolate material under the covers is not the way you want to end a long day.

With autism, the developmental milestones are not always met at the lightning speed that you would prefer. There is a reason that children develop on a continuum. Once you have had it up to your ears with one phase, they shift into something new. Not so much with autism. The rate of change can be painfully slow. I find that I have been repeating myself for quite some time now. I am saying things that would normally be dealt with in the toddler phase, but to a much older (and stronger I might add) boy. This is part of the reason autism is so exhausting, and causes me to consider an IV drip of Morphine.

When I got the diagnosis of Pervasive Developmental Disorder-NOS, I was relieved in some sense because it gave me a name for some of the harder behavior problems we were having. Even though the NOS stands for 'Not Otherwise Specified', I sometimes wonder if the psychologists behind closed doors call it, 'No Opportune Sleep', or even more so, 'Not Our Situation'. I have had some positive and negative experiences with doctors and psychologists, but no one truly gets your situation like you do. And, no one really prepared me for the side effects of PDD which are lots of repeating instructions, cross-eyed parents, high anxiety, and road rage. (okay, road rage might be a separate issue)

But, maybe it is because I am so close to it. Much like waiting for the pot of water to boil, every day can seem like an eternity. I can see change, but only when I take a few steps back and look at the bigger picture. Case in point, when Liam was in kindergarten, he became obsessed with a little boy in his class who had in Liam's words, 'straight hair'. This little boy had really thick hair that was kept pretty short. This thick hair resulted in it 'not moving' when he ran. Liam had beautiful, blond hair that had cute waves at the end. Even when cut into a little boy's haircut, there was still some movement. Each morning, it became more and more distressing to Liam when he would look in the mirror and move his head from side to side and see it 'move'. So, I had the brilliant idea of lightly spraying his hair with hairspray. Seemed harmless enough. Man, was I an IDIOT. The hairspray was a portal into maniacally needing to have hair that was pretty much glued to his head. He became so obsessed with his hair being 'straight' that if one hair was out of place, he would throw a tantrum and be out of commission for a really long time. I was now having to send hairspray to school in his backpack. He would get off the school bus with the most shellacked hair you have ever seen. It looked like a plastic wig. I won't even talk about the nightmare it was to wash it out every night. (ever had hairspray in the eyes?) So, one day I decided that this had gone a bit far. I decided that the hairspray was overtaking our lives and something had to be done. I had gotten us in this mess, so I had to get us out of it. I thought about the fact that Liam loved the calendar and remembered dates really well. So, I woke him up one morning and told him that beginning ten days from today, on May the 1st, all hairsprays would be unavailable at the stores. He blinked at me a few times and asked me why. I made up a story about how everyone was tired of hairspray and they would no longer be carrying it at any store in America. And...he bought it. We circled the day and I made sure he understood that on May the 1st he would no longer be using hairspray to make 'straight hair'. May 1st arrived, and we threw our bottle away (I prayed to God he wouldn't look under my side of the bathroom counter and see my stash). Small victory, but I took it!

Sometimes this is what I need- a big picture moment. I look back on that time and think, okay, I made it out alive. He no longer mentions 'straight hair' and only gets mildly annoyed at the occasional bed head. And, hopefully the things he is doing today will be something I can laugh about later. Here's hoping because that Morphine drip could get a little cumbersome.

War Time Battle or Just Dinner?

I want to start this blog post and talk about a little word called guilt. This tiny 5 letter word has brought all kinds of havoc into our lives, hasn't it? Guilt has the power to bring us to our knees. It brings with it all sorts of anxiety and pain. And, I see a lot of that going around in the world of parenting these days. And, for certain, it is in the hearts and minds of countless parents of children with autism. But, is all that guilt necessary? There is a weird pressure that we all feel. Are we doing enough? Should I medicate my child or is that just being selfish because I want him medicated? Do I do the treatments and diets that little Johnny's parents are doing or do I spend that money on a vacation for our family (or better yet, myself)? Is it normal that I don't like my child sometimes? Did I even feed him dinner tonight?

WHAT?! Don't tell me you've never been blissfully sipping your hot tea before bed and breathed a sigh of relief that your child is finally (somewhat) asleep, and thought, "holy schnike's, I freaking starved my kid tonight and TOTALLY FORGOT!" The secret Greater Judging Mom's Association (we'll call them GJMA) would NOT approve! Or, better yet, did your child scarf down an entire bowl of buttered popcorn, and you rationalize that maybe there is one part dairy (butter) and one part vegetable (corn), and that should suffice as a balanced dinner...we'll start the healthy plan tomorrow.

Guys, it's been 11 years for me. Eleven years of me saying, I'll start that tomorrow. And, the guilt, oh the agonizing guilt!! But, the battle scars from dinner time are deep. It takes a massive emotional wind up for me just to THINK through dinner time, much less follow through with it. I can remember my son being a toddler and putting two measly, eensy, weensy green beans on his plate. I was so proud of myself- "this will teach him to love and tolerate food with color on his plate", I thought. With a slight cross over of my feet, a confident twirl around, a smug smile of victory on my face, the two green beans grazed my ears as they were being hurled at me- one at my right ear and one at my left- like slimy  pieces of shrapnel from a battle of many more like these to come. Or, better yet, the disgusting gagging, coughing, wailing and gnashing of teeth that occurs when I put a piece of...wait for it...strawberry on his plate. Yep, strawberry. Isn't like every other piece of candy in the world made with strawberry flavor? And this is just in one 10 to 15 minute period of however many are in a day.

Which brings me back to guilt. We need to start letting go of this. Life with autism is difficult. It is not as it was meant to be. The bonding that naturally occurs between parent and child is not there. You are pushed away emotionally by a child that demands constant attention all day long. When the voices of guilt, shame, and doubt creep in, remember you are doing the best that you can do with what you have TODAY. Or, maybe better still, THIS MOMENT. Because, this moment is all we have anyway.

Now, I want you to wrap your left arm around your right, your right around your left, (look around to make sure no one is staring), deep squeeze, and say to yourself, "I am a good parent. I'm doing the best I can right now...NOW GO GET 'EM, TIGER!" The tiger comment is necessary to counterbalance the goofiness of self-hugging.

For real though, you're a super hero. Put your warrior gear on, and know we're all in the trenches together.

The Beginning

So, here I am embarking on a little journey. Doesn’t every blog start that way? Or maybe it’s “fly away with me to a place where you can…” to which you promptly turn your computer screen off, roll your eyes, and start sipping cough syrup.

I do find myself in an interesting place. I want to have a forum where I can share my experiences of life. You see, I am a mother to two boys, one of which has autism. My son is now 11 years old and has given me no shortage of tears and laughter-sometimes within the same moment. Because sometimes you literally think you are losing your mind. I know there are more of you out there in the world who feel the way I do. We didn’t ask for autism. We didn’t have that in our little photo book of memories. But, it is here, and it is now. And, it is difficult. Not just once a week difficult. It is daily hard. Morning, noon, and night. It is ever apparent to me that it is God’s grace that my little guy has just about one of the cutest faces you’ll ever come across because at times I want to hurt him, or me. But, mostly him. (insert wink smiley face here)

But, what I haven’t found in this world of special needs is a place where we can all just relax and laugh about our situation. Let’s face it. There are definite roles for support groups and even a good dose of therapy. But, my most therapeutic times of healing are me with a glass/bottle of wine, laughing my tookus (yes, I just googled that for spelling) off with a friend because of the absolutely ABSURD things that I have found myself doing because I have a child with autism. (flipping over my baby stroller so he can spin the wheels while I try on clothes in the dressing room) The asinine things that come out of my mouth. (“you MUST eat at least three bites of cheese sandwich on white bread before you can have an entire chocolate chip cookie”) This is what gets me through. This is what keeps me from going insane and being that mom who hasn’t showered in five days. If we cannot laugh about our situation, then we are forced to always cry about it. And, as the Good Book says, “laughter is good medicine.” 

So, curl up, kick your feet up-whatever makes you comfortable. Maybe give your little one the iPad while you check this on your phone because you’re probably trying to get them to bed, but they can’t fall asleep, and your sleep deprived and cranky, so the video babysitter is the best thing for now. Deep breath! It’s all going to be okay. We can wake up tomorrow and attempt at being a super hero. But, for now…