Tuesday, January 31, 2012

It's on my list!


For most parents it is often difficult to figure out what your child likes, what is motivating and how hard to push them when they are learning a new task or skill.  For kiddos on the autism spectrum figuring out these three things consistently at times seems impossible.  One of the first big issues that we had to tackle for Rye was food.  By the time Rye was four-years-old he was really only willing to eat about 12 things.  He would not eat anything that was mixed together and didn’t like any of his food to touch.  From a very young age he would line his food up based on color and then eat it in order, saving red food items to eat last.  We went through the whole well you will eat this or you won’t eat anything and eventually you will be hungry idea, and well Rye didn’t care and wouldn’t eat anything.  Yet another reminder that when you are on this journey that unfortunately, negative consequences don't really work.  His weight was a constant worry.  He was however willing to eat all healthy foods and pretty much keeps to a Paleo Diet of meat, fruit, vegetables and sweets as long as they were one of his 12 or so items.  I mean this kid wouldn’t really eat chicken nuggets for goodness sake!!  

We would fight it for a while then give up (the vicious cycle you easily fall into as an autism parent.)  Like I said we were lucky that Rye was willing to eat healthy things.  I talk to a lot of parents who fall into this cycle and unfortunately the only thing they will eat are unhealthy processed foods.  One day when I was trying to get Rye to try something (spaghetti with meatballs) he said “NO, not on MY LIST.”  I got to thinking, well what is on your list?  I then sat down with Rye and printed icons from www.do2learn.com (love this site by the way.)  I printed an icon of every food imaginable.  I began showing him one picture icon at a time and asked him if it was on his list.  He would say yes or no and then I would paste it on a poster board if it was a “yes”.  Come to find out Rye had close to forty foods “on his list.”  I then started feeding him only items on the list for about a week.  He was so happy.  After about a week I started mixing a few foods together and telling him “everything in this is on your list.”  I then showed him on the visual and he was hesitant at first but he would try it and he would eat most of it.  I then started reinforcing him for “adding” things to his list.  Worked like a charm.  After a while when I made dinner all I had to say was, Rye it is on your list, you need to eat it, and he did.  If I was able to "sneak" something in I would print the icon and put it on the list.  It seems silly but something about providing the visual and giving him the control to agree because it was on his list worked for us.  I know so many of you who struggle with this issue just thought I would share what worked for us.  Good luck!

Friday, January 27, 2012

When did you know?

Since starting Autism Pirate a few months ago I have had the privilege of having parents with kids on the spectrum reaching out, asking advice, giving advice (which I LOVE keep it coming) and in general people asking when did you know that your child had autism?  The latter being a very interesting question.

When you first get diagnosed and you are looking for answers you hear a lot of both sides of all the issues.  Diet, medications, therapies, biomedical interventions and what path are you going to take to educate your child?  

I have to tell you at first it was hard for us; we were in denial and hoping that maybe Rye was “just a boy” and possibly behind the curve because some boys, as toddlers develop later than others.  We moved from Colorado to Missouri at a pivotal time.   Rye was three and we were starting to notice that “things just weren’t right.”  Initially we thought he was stressed because of the transition of moving.   He had also attended a home day care, since he was 10 weeks old, where the provider, (Thank You Traci Myers) thought he hung the moon.  We had ups and downs over the next six months and continued to think that maybe things would work out if we just kept working on the basics.  It finally came down to an incident at church in Palmyra (the town where Scott and I grew up.  I have gone to this church my whole life and at the time my seventy-year-old mother had attended her whole life.)  Rye had a melt-down that could rival Mt. Saint Helen’s on its worst day.   I in turn had a melt-down that made Rye’s seem like small potatoes.  We basically drug Rye to the car and my Mother (who would rather cut off her right arm before yelling at him) says “HEY you need to listen to your MOM, I’m her MOMMY and I say you have to listen.”  This calms the situation for a minute.  I cry all the way to Claudie and Cheryl’s house (Scott’s Aunts who have basically raised him since his Mother died.)  Claudie met us at the door, trouble or not Rye has repetitively rung her door bell every time we enter her home since he was old enough to walk.  I remember so vividly looking at Claudie, crying and saying “just take him, I don’t know what I going to do, he is not alright”. 
That is it.  That was my moment.  The moment I knew.  The moment that made me recall every image that had ever worried me before.  The lining up of the toys, the obsession of watching toys that spin, the restrictive range of interests, and the language that I was praying would come and never did.  

It is also the exact moment, I had to dig deep.  REALLY deep.  The moment I had to tell myself, bring it on, I can do this.  It was the moment I said to myself my child has Autism.  

In retrospect it seems like a dream that I have had a thousand times before.  I knew it then, I knew it the exact moment Dr. Kanne told me a year and half later and I know it now.   My child has Autism. 

Wednesday, January 25, 2012

Nancy knows best...


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.

Paris.

Summer 2002.

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

ASSume you know.

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

One step forward, Two steps back


For years we have heard from our doctors that “in the new DSM, Autism is going to be classified as a spectrum”.   I don’t think many of us in the autism community were prepared to hear today that the proposed changes may not encompass Asperger’s Syndrome and Pervasive Development Disorder (PDD-NOS) as part of the spectrum.   Furthermore we definitely were not prepared to hear from Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine in the New York Times article  that by changing the definition “we would effectively end the autism surge” and“we would nip it in the bud.”   

Are you freaking kidding me! What?  Let me get this straight, if we change the definition, the surge is over, the cure is found and people currently accessing services, may no longer qualify because the criteria has changed and all of a sudden folks with related disorders don’t need the services that are helping them to interact with a world they don’t always understand.  I’ve got to tell you this just pisses me off.    I also find it very interesting that once we finally get the insurance legislation in place all of a sudden changes arise.  

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

Sanctuaries

"Go to your happy place." Close your eyes, take a deep breath, relax your muscles. Forget about work, let your mind stop running. Feel the tension release from your fingertips. Your toes. Be still, breathe, and think of this glorious place you'd like to be. The beach. The mountains. A river. Feel that place. Smell that place.
We all have a place. A happy place that we'd love to escape to more often than we do. Our son Rye, with his Autism Spectrum Disorder diagnosis, has his happy place too. It's called Star Wars. Parts I thru IV, or the LEGO Wii game, or the action figures, or the coloring books, or the encyclopedia of characters, or mostly, his storm trooper suit that he loves to wear and hide behind. It's a place that he "gets", where his imagination is free and his ideas are not wrong. When he's working on his math homework, there's right, and there's wrong. More often than not, his answers are wrong. Why wouldn't he then love to escape to a place where he can't be wrong? Nobody likes to be wrong. And when we go to our happy place, we're rarely wrong there. How can you be "wrong" at the beach? How can you be wrong when you're standing on a mountain top at 14,000 feet?
But then there's reality and we know we can't go to the beach, the mountains, that bench in the sun, or that cabin as frequently as we'd like. As Rye develops, we present him with reality at many turns in his day. Getting up, eating breakfast, walking to the bus, going to school, doing math, reading, going to this therapy and that, doing homework… and at the end of the day, if he's done (most of…) what we've asked, and he's tried really hard and he's earned it, he gets to go to his happy place for a little bit before he has to…. pick up his room, hang up his coat, put his shoes away, brush his teeth, take a bath, put his pajamas on…
Everyone needs a sanctuary. And it's important that we all get to go there, if not for a small percentage of our day. Just as important as all of our obligations, is our opportunity to recover from them. For Tara and me, we feel like a balance is necessary and we've been down the road of overload, and it doesn't work. In fact, it does more harm than good. If we're taking two steps forward and one step back, then we're better off than the reverse of that. Ultimately, our goal is for Rye's sanctuary to be less of his focal point, and more of a treat when he can get it. But we're a long way from that and we'll never get there without giving him incentives to tolerate reality. Sound familiar?

Saturday, January 14, 2012

One lucky family...


Thank you to the ladies (+ one incredible man) who get me through the sometimes disaster that is my life…

The “old school gang”

If they were drinks they would be called the Chops, the Butler, the Buckwalter, the Cornmeal and the Walker.   The friends who know you best because they have seen you at your worst, they have seen you at your most vulnerable moments, the memories that are foggy but the ones you hold on to because they are you as your younger self.  These are the ladies that make or break you if you run for political office because they know all of your “stories”, you know the ones, the stories that you don’t really want anybody to know.   They are also the friends that will love you forever; the friends who you don’t see for years but when you do get together you pick up exactly where you left off.   These are the friends that you call as soon as you learn that your child has autism.  They don’t really know what to say but they love you anyway.  

The inspiration

The Autism Mamma, the Warrior Mother. There are actually MANY autism moms that inspire me but there is one that inspires me most, and her name is fittingly Hope.  When you have a child with autism there is a certain comfort in seeking out other parents who are going through what you are going through.  I have been so lucky to find and connect with someone who understands, who gets it and who motivates me to move beyond my situation and turn it into good for others.  I have been so lucky to be involved with a non-profit started by my fabulous friend called Ella’s Hope.  Raising awareness, raising funds and being involved in an annual walk for autism that gives back to our local community.  I am inspired to be the kind of mother that she is and consistently exhilarated to be an advocate for all individuals on the spectrum.  

The fun-loving soul mate

The friend who oddly enough loves everything that you love to the point that it is eerie.  For me it is Janice.  We did not meet until I was 37.  Similar professions, love of movies, board games and politics.  The friend who you could talk to for hours upon hours and not even realize that that much time has gone by.  The friend who you go to movies or dinner with and have such a great time that you don’t even remember the data sheets, schedule or social story you need to finish at home.  The friend who allows you to have fun and feel fabulous about it without any guilt what-so-ever.  The friend who provides you with the peace of mind you need to feel okay while stepping outside of your life if only for a moment.  

The Best Friend 

For me, the Amoo.  The one (like your old-school friends) who knows you best but in a completely different grown-up way.   The one who knows what you need at all times without even asking.  The one who tells you the truth even when it is the last thing on earth that you want to hear but she does it anyway because she knows that hearing the truth is the only thing that will get you through.  The one that you make promise to look out for your children, especially your child with autism, in the event that you are not around because you know that she will instinctively do exactly what you wanted.    The one you thank God for everyday because you love her and her friendship as much as you love yourself.  

The rock.  

The one you love because you can’t imagine living your life without him.  The one that you fight with, cry with, laugh with and try to figure out the day to day life with on the spectrum.  The one person who understands because he loves your child as much as you do even on the days that you want to give up completely.  I am so thankful everyday that I have a husband who wants what I want and who would do anything, and does to ensure your boys live up to their potential.  

I feel confident in saying that the most important thing to take care of while you are raising a child on the spectrum is maintaining your friendships.   As hard as it is most days, it is the only thing that gets you through the darkness, the worry, the guilt, and the crazy.  I am so thankful for all of our friends and supporters, those mentioned here and the many, many others who check in with us, pray for us and those who just show up for us every day.  We are one lucky family! 

The Pyramid.

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

Proud Proud Momma


When we decided to turn my blog into Autism Pirate several months ago we made a list of blog ideas.  I was cruising through my list this morning and found “Rye has to read”.   For the past two years in every school meeting, behavior therapy consultation and speech therapy staffing I have said “Rye has to read”.  It has been my biggest worry for a long time.  How will this boy ever work or live in an apartment independently if he can’t read?  In fact I have jokingly said on more than one occasion that “he has to read, I want him to leave.”  Kidding of course, well maybe not!  I do however hope more than anything that Rye will live independently as an adult.   

I was convinced that reading was going to be an ongoing struggle because we started 2nd grade at Level 1.  Level 1 is where most typically developing kids are during kindergarten.  Well guess what folks…



Rye can read.  Yep that was a Level 10 book.   Proud Proud Momma!  We have a long way to go but when I think about where we started it is simply amazing.  Don’t give up, never give up, keep expectations high and know that no matter how long it takes to master each step there is hope for progress on whatever it is that you are working on.   

Sunday, January 8, 2012

To Tell the Truth

We try to teach our kids a lot of things before they grow up. One of our priority values is to always tell the truth. You can hear yourself now, "… what matters is that you tell the truth." For a person on the spectrum, rules are rules, and if one of life's rules is to tell the truth, then they're always going to tell the truth. But we all know, there's telling the truth for the sake of being honest, then there's not telling the COMPLETE truth for the sake of being polite. Did you color on the walls? vs. Do you like my fruitcake? Sometimes in life, we're better served by not telling the truth. So it's always interesting (and nerve racking) at Christmas or birthdays when people are giving Rye gifts. People often say, "I hope you like it." What do we ALWAYS say? "Of course I do, I love it. Thank you so much," (then return it or put it in the garage sale box in the basement). But if you ask him if he likes the gift you gave him, you better be prepared for him to say "no." 

Rye was recently given a toy. It was a a girl action figure in a pink suit. He immediately expressed his disappointment and wanted to call the person who gave it to him and tell them. We told him it wouldn't be polite to say that he didn't like it. We tried to explain that it might hurt their feelings. All of these things that fall into a more conceptual realm of something as simple as giving and receiving gifts, is hard for Rye to understand that it's okay to not tell the truth in this situation. We spent about an hour telling him that we weren't going to call and tell them that he didn't like the action figure (while he was crying and having a melt down). An hour of negotiating about what we COULD tell them, and landed on: "if we talk to them on the phone you can say you really liked the other gift they gave you and that your favorite color is red." Both of those statements are true. Fortunately, we haven't had the opportunity to talk to the gift givers and hope that our next conversation doesn't end in the complete truth.

Saturday, January 7, 2012

Autism Pirate…the story behind the photo


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

Welcome Scott Shade... What you don't see coming

I would like to welcome my fabulous husband Scott Shade... Scott will be joining me from now on in posting blogs about our crazy but fabulous little life.  Scott will be blogging about parenting a child on the spectrum from a father's perspective.  


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.




Other people have feelings?

Other people have feelings? What? One of the most difficult things to stomach when raising a child on the spectrum is the realization that your child does not care about what other people are feeling or thinking. Most days it seems there is a complete inability to look at a situation from someone else’s perspective. Theory of Mind. That is what it is folks. Most typically developing kiddos master this skill by age four or five. Rye is eight soon to be nine and he doesn’t have it. Research suggests that individuals on the autism spectrum do not employ theory of mind. I thought it would be interesting to test this out since I have a child with autism who is eight and a typically developing child that is 6. I used a version of the False Belief Test developed by Baron-Cohen in the eighties.


Wyatt, age 5
Rye, age 8

As parents we really have to focus on getting our children to understand that other people have feelings and ideas that our different from their own.  Rye definitely has a hard time with this and because he does he comes off as rude at times. I typically will say to Rye when you say or do that it makes me feel... or I will point out when I am feeling certain emotions and why I feel that way, what made me feel that way and remind him that even though he doesn't feel that way when the situation happens most people do.