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. 

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.”