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.