Tuesday, January 31, 2012
Friday, January 27, 2012
Wednesday, January 25, 2012
Disclaimer: I am not a world traveler; I have really never been anywhere outside of my boring life, but my honeymoon in Europe will go down as the best trip ever.
An unforgettable honeymoon destination.
God love Scott Shade. I mean I have to tell you he was pulling out all the stops. We arrive in Paris early in the morning via train, well TGV actually, and we are fortunate enough to check into our hotel early. I attempt to clear my head and recover from three days in Amsterdam by taking a shower. I walk out to find, wine, cheese, bread (which is the best on the planet) and a receipt for a “destination dinner” to the Eiffel Tower. We take a long overdue nap and wake up refreshed for our soon to be fabulous dinner. We don’t know what we are doing, don’t speak the language but find our way to the Eiffel Tower tickets in hand. We make our way up and sit down to dinner, ready to embrace the romance that only Paris and the Eiffel Tower can join together. We enjoy a glass of wine and then a tour guide comes up and informs us that we will be joined by another American who has booked the same “destination”. Our beautiful fairy-tale dinner has been interrupted by a middle-age Executive from Boston named Nancy. Scott Shade is furious but not really able to express it because Nancy is sitting and has already ordered Hors d'oeuvres. We are still in shock that our romantic dinner has suddenly turned into a nightmare threesome.
I actually decide that Nancy isn’t so bad and we start talking. We learn that Nancy is a successful Executive in Paris on business. She travels all over the world and from time to time books “destinations” so she can feel normal and doesn’t forget how fortunate she is to see the world on the company dime. I tell her that Scott and I have been together for years but decided to get married because we want children. Nancy begins to tell me how being a working mom and attempting to be a “good parent” is her biggest challenge in life. She then tells me something that had no real meaning at the time but has since become my life motto. Nancy says, “You know Tara when I first became a mother I had a lot of guilt, I worried that I was never going to be good enough, I was never going to be able to do it all. I soon realized that I was very naive to believe that I am the only teacher that my child is ever going to have. I believe that it is my responsibility to love my child and be okay and happy about the fact that other people can love and educate my child when I can’t be there. If I do that, I AM doing my job.” I had no idea at the time how true this statement was going to be for me in my life.
When I think about our journey, where we began and where we are now I can’t even imagine where we would be without the guidance, knowledge, and (at times unsolicited) support of others who have shaped our world as we know it. If there is one piece of advice I can give you as a parent of a child with autism it is this… don’t be closed minded or competitive. It is okay to admit that most of the time this journey is too much to handle on your own. Understand that you don’t have to be an expert and there is probably ALWAYS somebody who knows more than you do. Embrace the knowledge of others and learn from it. I wish I could find Nancy and thank her. I quote her regularly and tell myself when I am at the end of my rope that I don’t have to have all the answers, I don’t have to be an expert, It is okay that some parents know more than me, and most importantly at the end of the day all I have to do is love my child and be happy that he is learning. If I can do that, it can’t be wrong.
Monday, January 23, 2012
It's the age old saying about "assuming" something of someone, but it really is unjust to assume anything about anyone or judge anyone for anything. You never know what someone is going through or why they're doing what they're doing… or why their kid is acting the way they are. We've all done it. We've all judged that parent in the grocery store with the screaming kid. No, most of us don't think our kids are perfect, but we will, or have thought, "well what that parent needs to do is…." It's REALLY easy to do if you don't have kids, and it's pretty easy to do even if you do. Here's the kicker. What if that child in the grocery store hears the fluorescent lights buzzing so loudly that they can't focus? What if you heard the squeaky wheel of the grocery cart, the overhead announcements, people talking and the other whiney kids all at the same loud level. Now imagine that you can't really express the fact that all of that annoys you. It just flat out drives you crazy because you don't know any different. So if i'm a person with Autism and i'm in the store and all of that happens…. what i'm likely to do is just throw a fit. maybe because it's similar to babies who get their energy and frustrations out by crying. Maybe they've learned that they leave that environment more quickly. Maybe it's just to get someone's attention to say, "oh my God people, make this stop!"
Wyatt had basketball this past weekend. Tara works on Sundays, so off Wyatt, Rye and I go to the game. The gym is noisy, but the first game there last week, Rye found his little sanctuary, up at the top of the bleachers, with my phone playing Angry Birds and away from anyone who might annoy him. Today, the guy running the program asked for parent volunteers to help coach. I've done it before, enjoyed doing it, so i offered up my hand in helping nine six year olds with the game of basketball. I kept an eye on Rye, he came down and was shooting baskets and was running around the gym, but seemed fine, entertained and relatively well-behaved.
At halftime, i was throwing out high fives to my players, told them to go get a drink and come back ready to play the second half. About that time this woman approaches me, points her finger at me and asks if i'm the dad of "that" (pointing to Rye) boy. I said yes. She then said, "well, he's climbing all over the bleachers, going to the top, which I've told him he's not supposed to do, he's not listening and he's basically, well, being… rude." Now I'm really a pretty mild mannered person. I don't snap or yell at people. But the tone of this woman set me off. I said in a very loud voice because I also saw the glimmer of support this woman was getting from other people, "well, you know what? he has autism and i can't coach my other kid's team and keep an eye on him 100% of the time. I'm sorry, but that's the way it is and I'm doing the best that I can." Her eyes got big and she got "the look." "Oh, I'm sorry, i didn't know," she said. I said, "No, you didn't."
At this point i see steam coming out of Rye's ears. He's mad as can be at this bossy woman telling him he can't climb to the top of the bleachers, which was perfectly fine by me the week before. (it's the old, "you do it that way once, you do it that way every time" routine) I take Rye out of the gym, he's having a full on melt down. He's screaming "I want to leave, I never want to come back here." I'm trying to get him to play the stupid Angry Birds game on my phone so I can just go coach the second half of Wyatt's game. But it's obvious that's not going to happen. Complete scene with kicking and screaming and crying and yelling. I do take him back into the gym because I felt like he couldn't just get off without revisiting the issue. Then i let him go out into the hallway, he grabs my phone and settles down a bit. In the meantime, another dad has jumped in and is helping, I apologize to the main coach and find my place on the sidelines as the one assisting with substitutions.
I'm not sure what that woman was thinking the rest of the game. I'm not sure what anyone was thinking, and honestly, I don't care. The point is, she assumed my kid was just a bad kid who doesn't like to listen, and that I was a bad parent who couldn't control him. In effect, that's true. But it goes a little deeper than that. There are bratty kids who don't listen and throw fits because they know eventually they'll get what they want. But since our journey through Autism Hell has begun, I don't solely think, or assume, that that's the case. Maybe that child throwing a fit and having an obnoxious and embarrassing fit in public doesn't know how to process their anger, their frustration, or the four million irritants in their environment that are driving them crazy. Sunday i proved i can be an ass, but not by assuming.
Thursday, January 19, 2012
I can't believe that after everything we have been through I now feel RELIEF that my son has a diagnosis of Autistic Disorder instead of Asperger’s Syndrome or PDD-NOS. I now feel RELIEF that my son meets over eight criteria instead of six across 3 areas of development. Let’s hope that this “disagreement” among the doctors about how this will affect the numbers is resolved and included in the 10 percent of changes that are yet to be made. Freaking Autism! I swear one stepforward, two steps back.
Wednesday, January 18, 2012
Saturday, January 14, 2012
Pyramids, as defined, are structures whose outer surfaces converge at a single point. I think of our life with Rye at the top of that pyramid. A primary focus. This isn't a unique perspective, all parents think of their kids as their primary focus. But because of his ASD, our pyramid may have a few extra layers of support.
People ask how he's doing and what we do for him. He's doing pretty well because he has a really well built pyramid. With him at the summit, he's supported in many ways directly by his mom, me, Wyatt and his teachers. The next layer that supports him and us, are our family and friends. Then we move into layers of support that move in and out of his life but are all part of this bigger experience and foundation. Therapies and resources.
We've done three years of continuing Behavior Therapy at the Thompson Center, which is so very valuable to us and has taught us how to be better parents (special needs or not). He's done Speech and Language Therapy for nearly three years at University of Missouri's Speech and Language Lab, directed by the amazing Barbara Brinkman and Leanna Lawrence. We also did a "short stint" with Neurofeedback Therapy, which we were less impressed by, but important to check off the list! Prior to all of this, Rye did about two years of Occupational Therapy with Jennifer Fell that really helped develop his fine motor skills, a critical puzzle piece in his ability to learn. He participated in a Social Competency Group at the Thompson Center for about six months, working on basic social skills. And we can't say enough about his school and the special attention they give Rye in the form of extra areas of emphasis and pushing him to learn and excel. As a family, we did an all-day for two weeks Parent Training Program at Touchpoint Autism Services, which really forced us to make our positive behavior support approach a lifestyle and not a part-time parenting technique. Wyatt participates in a Sibling Group at Touchpoint, which is a nice thing just for him. Tara and I attend the annual three-day Autism Conference in Columbia which is filled with excellent keynote speakers, workshops and seminars. Tara, because she IS a Behavior Consultant, has implemented a token economy system, rewarding him with his Rye Cash for preferred behavior and response; his "list" of foods he'll eat; a calendar that helps him know what's ahead; and the list goes on. Touchpoint offers a respite night throughout the year which allows Tara and I to take a breather and have an old fashioned date night and dinner. Then there's the social integration of sporting programs like baseball, swimming, pottery classes, acting classes and basketball that Rye loves (well, he wasn't so crazy about basketball, but hey, you can't love them all!). We feel it's so important to take advantage of everything available and we're so fortunate to have landed in Columbia, where we have a wealth of services and resources, and are willing to reach out to all of them.
We're all impressed by the great pyramids in Egypt. Because of the support we receive from all of you, and the professional assistance we receive, I'm just as impressed by the size and perfection of ours.
Thursday, January 12, 2012
Sunday, January 8, 2012
Saturday, January 7, 2012
It is a look I will never forget. It was spring. My friend Barbie and I decided to take our boys to the fabulous St. Louis Zoo. In our world the zoo is not always the best place to go, but we planned ahead and we were up for it. The day began like any trip to the zoo does by struggling to find parking. I of course was unwilling to pay ten dollars to park in the zoo lot so we found parking in front of the fountain by the World’s Fair Pavilion. As soon as we got out of the van, Rye starts begging me to get into the fountain. I immediately say no way and begin predicting the exact schedule and expectations for the day. “Please mom please I have to get that sword” I brush it off as typical Rye silliness and tell him there is NOT a sword in the fountain. For those of you who don’t know Rye, he is obsessed with swords. He will make a sword out of anything. “Mom I promise, please!” It takes a while but we finally make our way into the zoo.
We have a GREAT day at the zoo. All the boys are pretty well behaved so we stay all day. By the end of the day we are tired and really hot. Since we had such a great day I decided to let the boys stop at the gift shop on the way out of the zoo. Wyatt quickly picks a stuffed animal to add to his ridiculous collection. I’m encouraging Rye to pick something and he says “No mom I don’t want anything I want the sword from the fountain.” I tell him that there is not a sword in the fountain and he should pick something. He refuses so we leave. We begin walking to the van. As we are approaching the fountain and I can sense that actually getting into the van before dealing with the fountain issue is not going to be easy.
As we approach the fountain we see several families playing on the “stairs” of the fountain. Barbie and I decide, okay fine you can play in the fountain but only on the stairs where the other children are playing. The boys are thrilled they are climbing and splashing and I have to admit it felt great after a long hot day at the zoo. After twenty minutes or so I begin predicting that it is going to be time to leave soon. The countdown begins. “Mom please I have to swim out there, I have to get the sword.” Then he says it. “Mom believe in me mom, I can do it.” Seriously are you kidding me! If there is one thing that a child with autism can say to a parent that will get them to do anything, that is it. I’m tired, hot and so ready to leave. “Fine Rye, just do it”. He practically dives into the front pool of the fountain and starts swimming, and continues swimming like twenty feet. The other parents around are beginning to give me “the look.” You know the one. Are you seriously going to let him do that? I ignore them as usual because they have no idea what I’m dealing with at this point. I am praying that when Rye gets to the middle of this fountain and he doesn’t find a sword that he won’t have a meltdown.
For those of you not familiar the fountain it has steps behind a giant pool that is about the size of a large basketball court. I am allowing Rye to swim to the middle of this fountain which I am pretty sure is not allowed and could possibly get me arrested. I’m not worried about safety, Rye is a fish, a fantastic swimmer. He can do all four strokes and has taken lessons for years but he is clearly in an area he should not be in.
I watch him swim for what seems like an hour and praying that this all ends well. Before I know it he is in the middle of the pool. He jumps up and throws his hand into the air like a true Musketeer with a look of accomplishment I will NEVER forget. He yells “I told you mom!”
In his hand is a stick that looks like a sword that it is a least two and half feet long. There it was the sword in the fountain. I am shocked. The look of accomplishment on my boy that day is one I will never forget. He was truly happy. He swam back to the stairs, proudly showed me his sword, climbed to the top of the stairs and I took his picture. The Autism Pirate photo. I was so proud. Then I told him to hurry up and get in the car before the police arrested us both!
When it comes to parenting a child on the spectrum, trust your gut and trust your kid. Don’t let anybody judge you. If you think it is something that needs to happen, you are probably right. Believe in your child, sometimes they do know what is best.
Friday, January 6, 2012
What you don’t see coming…
When you receive your child's Autism diagnosis, you think, “this will change our lives.” THAT, you understand. What you don't understand, is how much, and WHERE it will change your lives. You know there will be appointments, therapies, a schedule of aggressive behavior analysis and modifications, an IEP meeting at school, helping your family and friends understand it and how to approach situations…. What you don't see coming is how it affects the fun things you do as a family. How it JEOPARDIZES the fun things you do as a family. When we moved to Columbia we thought how fun it would be to go to Mizzou football games as a family. Taking the boys, seeing Truman, the Golden Girls, Big MO, the national anthem, and of course, the excitement of kickoff. Rye doesn't really like crowds of people, or noise… or football for that matter. So strike that "fun" thing from our list. One of the hardest things is deciding what kind of torture, and to what degree, you're going to put your kid on the spectrum through for the sake of "family fun" and engagement. On one hand you want to force engagement because you know of the benefit after years of doing it. On the other, wouldn't it be nice if Rye could just do what he wanted for an afternoon? Wouldn't it be nice to not put up with a melt-down and just lie on the couch and watch the game with instant replays? Lying on the couch on a lazy Saturday afternoon, watching the game, Rye’s happy playing and doing his thing… maybe it’s exactly what I saw coming in the first place.