On Two Wheels (Part Two)

If you haven’t read my last blog post, you’ll want to scroll down and catch up, or just click here: http://quirks-and-chaos.blogspot.com/2014/06/on-two-wheels-part-one.html  

This week was bike camp. I have only recently learned about this program and was very excited to find it. If you have a special needs kid in your life who cannot yet ride a bike, I encourage you to find a bike camp. 

The program was hosted by a couple of great teachers from our local school district through an organization called I Can Shine. You can find them at www.icanshine.org if you are interested. They have many bike camps going on simultaneously throughout the summer. If there is not one nearby, ask them how to host a program in your town. There is a reason they have an eighty percent success rate. This program was fantastic.

An amazing group of people volunteered this week. The volunteers during Tate’s session were college students majoring in Occupational Therapy. The sessions were an hour and fifteen minutes and each camper received individual attention from two or three volunteers. Tate’s session was very well run. The volunteers were as valuable as the modified bikes provided. I think I heard there were 37 campers total, eight in Tate’s session. The helpers outnumbered the riders. 

Day one, the campers were on bikes that had a large roller for a back wheel. There was almost no way a kid could tip a bike like that. The bike experts from I Can Shine adjusted the bikes to fit individual riders. They rode on a smooth gymnasium floor in the air conditioning. The kids in Tate’s session became very confident and by the end of class were pedaling like champs. I was pleasantly surprised by Tate’s speed at the end of class. It was definitely fast enough to keep a bike balanced, but I was still skeptical that he would be able to balance without the security of the roller.

Day two was called Tandem Tuesday. They used the roller bikes for a while at the beginning of the hour and then the campers all got turns on a two-seater bike with an I Can Shine staff member behind them. Tate told me the guy who rode with him was a scientist. I couldn’t figure that out but later I heard that he is a science major and he must have told Tate. HA. The “scientist” wore a cape like a super hero and I’m sure the campers got quite a kick out of that. I know I did.

Day three was called Launch Day. They went outside to the school parking lot and used a bike with a long handle on the back. An adult could hold onto the handle if the camper needed help balancing. The volunteers ran alongside the bikes, steadying the riders as needed for as long as it took. But here’s the amazing part: It didn’t take long until the campers were riding with no help. Tate was amazing. I never would have believed it but I saw it with my own eyes. Tate was on two wheels, unassisted, making turns and looking like he’d been riding for years. This was only day three. Most of the other campers were also riding. Tate fell once and skinned his knee. No big deal. He was back up and riding in a few minutes. I cried happy tears. I was so proud. On the way home I asked Tate if he was glad I had insisted he go to bike camp even though he did not want to go. He said, “Yes.”

Day four was more of the same. Tate rode and rode and rode. No skinned knees this day. He needed someone to steady the bike when he took off each time but once he was pedaling, he was the master. Watching him struggle to take off brought back a long forgotten memory for me. I remember being able to ride long before I could just jump on and go. I used to pull my bike up to the bottom step of our sidewalk where the driveway sloped, make sure the pedals were positioned just right, and hope that I could get a good start before I crashed. Wow, that was a long time ago.

As we left bike camp on Thursday, Tate told a volunteer. “I can ride a bike now so I’m going to bike across America.” The day before bike camp he told two friends that he was going to learn how to ride a bike and bike across the country like a hippie. Then there was that trip to the mall that I mentioned in my last post (Part One). We are going to have to convince Tate that there are a lot of rules and responsibilities that go along with owning a bike.

He calls his bike "a rocket on wheels."

Day Five (Graduation Day) was today. Tate was transitioned to his own bike. If you read part one of this story then you may understand how great that was for Tate. He had fallen in love with that bike. He has been anxious to get on it and ride. On this day of camp, lots of time was spent on the take off. He struggled with it but at the end of the session he had three good starts in a row. As Tate was wheeling that bike back into the gymnasium for a small graduation ceremony I noticed how comfortable he was with the bike. Was it only one week ago that he so awkwardly wheeled it out to the van from the back of Walmart? During the ceremony I noticed (once again) that Tate towered over the other children and even the adults who were teaching him. He was the tallest one present. Being so tall makes his handicap even harder for everyone. Tate looks older than he is. He acts younger than he is. His older siblings take him places and it appears they are treating an adult as if he is seven years old. But there again, THAT is a whole ‘nother blog post.

Today, I overhead Tate casually mention to one of the volunteers that The Lego Movie is coming out next Tuesday so he would bike to Walmart on Tuesday to pick it up. This afternoon I had a talk with Tate about his limitations and rules concerning the bike. He seems to understand that riding on the roads is not going to happen for a while. Although Tate is unable to determine what is dangerous and what is not, he usually does adhere to the rules and boundaries he is given. We do have some silver linings in our world.  Ha

I know I’ve said it before in other blog posts, but if you do not have a child with special needs (or maybe teach children with special needs) then you probably will not be able to grasp the gravity of Tate’s achievement. I can hear people thinking, “So, he can ride a bike now. Big deal. Who cannot ride a bike by the time they are 12?” People with autism battle so many sensory issues and have such a hard time with motor skills and concentration that things like this do not come easy. Tate can barely hop on one foot or stand on one foot without falling. Balancing is hard for him. I cannot say it loud enough: “This is a BIG deal.”

I saw two quotes this week that really hit home for me. “My disability does not exceed my abilities” was in my Facebook feed. I have thought a lot about that. I limit Tate all the time because of his autism. Of all the people in this world, I should be the one who does not see the word “autism” written across his forehead. He is more than autism, and autism does not have to define everything about him. This next one is a Chinese proverb: “The person who says it can't be done, should not interrupt the person who is doing it.” When that doctor told me to find a bike camp for Tate, I was so skeptical.  There was really someone who could teach Tate to ride a bike? In one week? Oh, give me a break! After all, I had tried and failed. I need to stop doubting and interrupting the people in Tate’s world who believe in the “impossible”, because the things I believe are impossible sometimes are very doable. Sure, I found a camp, signed him up, paid the fee, talked it up to Tate, bought him a bike, forced him to go and participate. But I did not BELIEVE he would succeed. I just faked it. I’ve done that a lot. I provide Tate with the opportunities to achieve great things often and cheer him on while negative thoughts dance around in my head. Perhaps if I remember Tate’s rendition of Proverbs 3:5: “Trust in Jesus and lean forward” (see link below) I will be able to replace those negative thoughts with positive ones. 

See past blog post: http://quirks-and-chaos.blogspot.com/2013/04/trust-in-jesus-and-lean-forward-tate.html

On Two Wheels (Part One)

How many of your childhood memories revolve around a bicycle? I learned to ride on a small red bike, my dad or an older brother running beside me and helping me ‘til I learned to balance all by myself. I remember getting my first new bike with a banana seat for my ninth birthday. I think I rode most of the tread off the tires of that bike. I remember the thrill of getting permission to ride all the way around the block by myself when I was old enough, and then later riding to the store with a friend on occasion. There were bike wrecks and bloodied elbows and knees. There were flat tires. Did anyone else out there ever get their pant leg caught in their bike chain? Eventually I upgraded to a ten-speed, but that magenta-colored bike with the banana seat will always be the bike I remember most.

My older kids learned to ride around age five, give or take a year, usually on a hand-me-down bike. Then we would make a trip to the store to buy them a bike of their own. One of my younger kids had no interest in learning to ride. Each summer I tried to coax him onto a bike and each summer he said, “no.” Finally, about age ten, the first day of his summer vacation, I announced that there would be no video games played until he could ride a bike. He learned in a matter of minutes and rode a lot that summer. He continues to ride often. Our youngest, Sydney, learned to ride at a fairly young age, handicap and all. I found a bike at a yard sale that was like the one I loved so much as a kid, all the way down to the banana seat. She rides it a lot but recently has decided she needs to have one with hand brakes. I see a new bike in her near future.

Tate, like many people with autism, has trouble with motor skills. He cannot jump gracefully or run quickly. He walks with an awkward gait, often on his toes. He was able to ride a tricycle when he was a preschooler and we tried a few times to get him on a bicycle with no success. Recently, a developmental pediatrician we saw asked me if Tate liked to ride a bike. I told her that he was unable and she asked me why. I was surprised that she was even asking. She sees kids with autism all the time. I had to ask myself: Was I just rationalizing and making excuses or were there valid reasons Tate could not ride a bike? We had not tried to get Tate on a bicycle in years. Although Tate does have to work much harder than his neurotypical peers to master new skills, he sometimes surprises me. Just saying that it surprises me when Tate succeeds at difficult tasks makes me somewhat sad and embarrassed. Why should I NOT expect Tate to do well? Why am I such a cynic? I’ve never been that parent who expects great things from her children. I expect average things from my children and less than average things from my children with disabilities. Do not misunderstand me. I am extremely proud of my children. ALL of my children. And I believe my children ARE doing great things. But, I have always been somewhat of a pessimist, my whole life. I suppose if I do not expect great things in life then I cannot be disappointed if great things do not ensue. Then, when great things DO happen, I can be pleasantly surprised. What would it have been like had I lived the last 51 years expecting great things? Would my family be doing even greater things than they are now? I surely hope my pessimistic attitude has not held any of them back.

The day I told Tate’s doctor he could not ride a bike she urged me to find a “bike camp” and enroll him. I had never heard of bike camp. She gave me the name and number of a man to contact in Kansas City who would be able to tell me about it. I called and emailed a few times but never got him to return my calls. Then, amazingly enough, a bike camp fell into our laps in our very own small town. This bike camp is a fantastic opportunity for Tate. I do not believe I would be exaggerating to say, learning to ride a bike could be life-changing for a kid with a disability. The camp boasts of an eighty percent success rate. It is scheduled for this week. 

I have spent a couple of months trying to get Tate excited about learning to ride a bike. He has NOT jumped on board. He has told his peers things like, “My mom THINKS I am going to bike camp this summer but I am not.” He has tried to convince me he was too busy and he has made many excuses. I’ve heard, “I’m not into riding bikes” from him often. He has been very anxious. He has nervously paced and argued for the past two weeks about bike camp, bringing it up often. So, hoping to win him over, I took Tate to Walmart one day last week and showed him the bike I wanted to buy for him. The bike recommended by the bike “experts” is called a cruiser. It has coaster brakes, a wide seat, high handlebars, and wide pedals. Remarkably, it was love at first sight for Tate. He could not own it soon enough. We went back this past Friday morning and purchased the bike. I did not think Tate had the coordination it would take to even wheel the bike to the front of the store so I offered to do it, but he insisted. I had to show him more than once how to hold the handlebars and lean over the bike to steer it as he walked beside it. He probably looked pretty strange pushing that bike through the store. I had a flashback to a few of my six year olds pushing much smaller bikes through Walmart when we were buying their first bikes. This time I was there with my 12 year old who is 6’2” tall. It took a very long time but we made it to the register and out the door with that bike. He even helped me lift it into the van.

The cruiser

So, what does a child with autism do when he becomes the proud owner of a bike that he cannot yet ride? He sits by it for hours. He lovingly wipes it off with a rag once in a while. He takes pictures of it. He talks about it to anyone who will listen. He even fantasizes out loud about riding his bike to the mall. If you have been reading my blog posts long, you will remember Tate has had many unusual attachments to things over the years. There was a cloth diaper fetish when he was little. Then there were ribbons and cords. The vacuum was his major love interest for a long while. There was a stuffed duck he named Boris, a Woody doll, spiral notebooks, a red sweater, his i-pad, his watch, his hat, and his KU Jayhawk hoodie (which we recently had to seize due to the heat…but that is a whole ‘nother blog post.) Never has Tate become obsessed with something this large or something that he cannot keep in the house. 

Despite the love of the new bike, Tate is still insisting he should not go to bike camp tomorrow. He was almost desperate in his attempts to convince me today. We were with friends this evening and he was still attempting to persuade me to let him skip camp. Exasperated, and forgetting that I cannot reason with Tate (it's the autism) or EVER win an argument, I said something like, “Unless you can show me you can ride a bike this evening, you are going to bike camp tomorrow.” He brightened right up, ran over to my friend and told her that his mom had changed her mind and he did not have to go to bike camp. All he had to do was ride two inches on his own. Tate does not understand numbers and has no concept of measurement so I did not let that part worry me. My kid got on that bike tonight and practiced and practiced, determined to get out of bike camp. He persevered much longer than I imagined he would. No, he did not ever truly ride the bike, but with someone (2 or 3 people at times) helping him balance he did pedal it. He was also able to balance by himself with both feet off the ground for a couple of seconds at a time. Yes, he will still be going to bike camp tomorrow and he is still dreading it. The cynical me, the pessimistic me, has thought silently for weeks, “two out of eight kids won’t learn to ride the week of bike camp.” The mom that I wish I could be, the mom that I SHOULD be, will be with Tate every day this week telling him, “You can do it.” Both of us will be proud of him no matter what.

And if he DOES master two wheels? I should probably have a talk with him about that ride to the mall fantasy he is having. 

Read Part Two here: http://quirks-and-chaos.blogspot.com/2014/06/on-two-wheels-part-two.html

I would be so appreciative if you'd tell me in the comments section below where you saw this post. It has been circulated more than any post I've written to date and I'd love to hear where some of you have found it.

Never A Dull Moment

My three youngest kids are so very different in many ways but they have a few things in common. One of the things I have noticed over and over lately is that they all three know a lot about nothing. I am not saying they do not know much. They know so much! But, a lot of the things they know about are things that are not important to anyone but them.

Tate loves movies. He even loves watching the credits and he memorizes the names of the actors and voices in many of his favorite movies. If he gets started talking about a movie he likes, he will not be finished with his commentary until he has told you what year the movie was released, who the main characters are, who did the voices for any of the animated characters, and what the storyline was. If there is a soundtrack to the movie then he will tell you the names of the songs and who sang them. Why can’t he do that with information that he needs? Why can’t he memorize facts about things that are REALLY important? Why?

Tate is not the only one that has an aptitude for remembering worthless information and disregarding the stuff that really matters. It never ceases to amaze me how many bits of useless trivia Levi can spout in a day! Last week I remember him telling me that $20 worth of dimes, quarters, or half-dollars would all weigh one pound. Google it. I did. It’s true. But, why does he know this? Did you know lightening is five times hotter than the surface of the sun? Or, when bombs were dropped on Germany during WW2 some of them caused tornadoes of fire? And, this is outrageous: there is a fungus in the Amazon that releases spores that attach themselves to ants. The spores control the ants and they become like zombies. The ant host climbs as high as it can and then the spores are released from the ant’s exploding head to attach to more ants on the rainforest floor below. Wild I know, but true. Yesterday, in the pool I learned from Levi that a person’s neck is exactly half the size of their waist. Today he told me that only about two percent of the water on earth is fresh water and the rest is salt water. I have checked all these trivialities and he was spot-on for everything he told me. Now here is one I could not confirm: Did you know Ninjas only engage in hand-to-hand combat as a last resort?

Unfortunately, Sydney’s trivial “facts” are not nearly as accurate as Levi’s, or even Tate’s. I believe her rule of thumb is “I make it up as I go along.” In addition, Sydney seems to believe that saying something out loud will make it true. If she doesn’t know something she just improvises. Today she told me that a spider is not dangerous unless it has bumps on it. I believe her exact words were, “If you see a spider with bumps, it is dangerous; but a spider with bubbly bumps could carry you off.”

Sometimes Sydney’s outlandish stories are almost believable when she is giving the specifics. Her imagination is tremendous! She often fools people, myself included. Sydney frequently refers to her imaginary horses or dogs and tells us details about them. Occasionally my husband will exclaim, “She did it again. She convinced me to look toward the pasture to see the horse she was telling me about.” A few days ago Sydney was waiting at the front door for the arrival of imaginary guests from California. When she finally hollered, “They’re here!” I found myself almost come out of my seat so I could go and greet her friends.  She has a gift. With this talent I wonder why she cannot remember the things we need her to as well.

If you’ve ever heard the expression, “Never a dull moment” I think it describes my life to a t. These three keep my life interesting. I cannot say I wouldn’t want it any other way exactly because I would so love to be able to take the disabilities away from Tate and Sydney. However, I can say that I love my life and I enjoy my kids, quirks, chaos, and all.

If you like this post, you might also like this one: Scripting Sponge Bob 

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Teaching Sydney (or TRYING to)

Impulse control. You probably have not thought much about how important it is to people unless you are close to someone who has very little self-control. The frontal lobe of your brain is the part that helps you stop yourself from doing or saying the inappropriate things that you think about. Believe me, impulse control is extremely important. Without it a person will constantly be in danger. They will break rules and laws. They will lie. They will lose friends as fast as they make them. THEY DO NOT LEARN FROM THEIR MISTAKES.

The frontal lobe of a person’s brain is damaged when they are exposed to alcohol in the womb. Fetal Alcohol Syndrome is 100 percent preventable. A huge percentage of the people in our prisons have FAS. It is no wonder. When you have FAS you barely stand a chance in our society. Sure, many of the children are adopted into homes with good parents. But, mom and dad can keep a child safe for only so long. They do grow up and they still have FAS. They still have no impulse control and they still need constant supervision.

Sydney’s lack of impulse control affects us every day. It shows up in so many ways. Sometimes it is funny but usually it is not. This morning I told her to stay in her room until 9:00 while I showered and dressed. She came into my room at 8:55 and said, “It’s 9:00.” Me, knowing I had five more minutes said, “It is?” She responded, “No, not really.” Then she asked me where her popcorn was from last night. I told her it was in the kitchen. She said, “I just looked.” I said, “So you left your room?” She said, “No I didn’t leave my room but I went into the kitchen to look for the popcorn and it wasn’t there.” She tattles on herself quite often and then talks in circles trying to fix what she uncovered, contradiction in every sentence. Sometimes I think she believes I am an idiot. Sometimes it is hard not to laugh right out loud when i should be scolding her too.

A few days ago she had lifesavers and was trying to open the packaging. She was with her daddy in his truck. He asked what she had and she quickly responded, “Oh, you wouldn’t like these” trying to convince him that she shouldn’t have to share. She forced the package open and dropped the first one in the floor. She said a word that society would not consider a curse word but one our family does not use. Shawn frowned at her and shook his head saying, “We do not say that.” She immediately tried to convince him that he heard wrong and what she REALLY said was “I’m missing out on that one.” He managed to keep a straight face, barely.

Doctors have told me that Sydney will not learn from her mistakes and I have seen that consequences do not really teach her much but I keep trying. A few mornings ago I told Sydney she could go upstairs and play Nintendo in her sister’s room if she did not wake her brothers who were asleep in their rooms close by. She assured me she would be as quiet as a mouse. She went upstairs and two minutes later I heard her singing at the top of her lungs. I told her she could not play Nintendo for a few days. She can tell me WHY she cannot play Nintendo and she can tell me she won’t do something like that again but she will. I know she will.

Sydney loves flip-flops. Flip-flops are almost as important to her as the air she breathes. The winter months when I hide them (yes I have to HIDE them) are torturous to her. A week before school was out we had a cold rainy morning. Sydney was very upset that I wouldn’t let her wear her flip-flops. I insisted she wear socks and shoes and take a sweatshirt. She asked if she could take her flip-flops in her backpack. I told her she could not. She asked why. I explained again that it was a cold day and I wanted her feet to be warm. When I picked her up at the end of the day, she was wearing flip-flops. It didn’t even occur to me she would have snuck them into her backpack. I have watched her do things like this for nine years and it still shocked me that she would openly disobey like that and not anticipate any consequences. I took all her flip-flops and put them up for a week. I believe it was the longest week of her life and she cried about it several times. Will she learn from it? Well, I know she will REMEMBER it but I do not think it would deter her from doing it again.

This past weekend we went to a little rodeo in a small town nearby. There was a fenced-in play area with four of those big bouncy houses and slides next to the arena. Five dollars got you a ticket to come and go all evening. Several times throughout the evening I allowed Sydney to go jump for five or ten minutes. The medication she takes for ADHD had long worn off and sitting in the stands was asking too much of her. (See? I’m a reasonable person.) It was hard to keep track of her among all the kids coming and going out of those houses but I managed. The last trip in, I watched as she ran over to a mom with a toddler. Sydney LOVES babies and I predicted quite accurately what I was about to witness. I was not close enough to intervene before it happened though! The mom was helping the toddler bounce on a corner of one of the play sets. Sydney crowded in between the child and her mother and tried to take over as caregiver. The mother was so surprised she actually turned the toddler over to Sydney for a few seconds before she realized what she’d done and regained custody of her baby. I grabbed Sydney and was too flustered to come up with words. This time I asked her Dad to explain what she had done and why it was inappropriate. He did. She listened but I honestly do not think she understood a single word about why it was not okay to walk up to a stranger and try to take their baby away from them. Sigh.

At the rodeo

Last evening I witnessed her doing a similar thing but it was not with a baby (thank goodness). A friend of ours was over and playing a hand held game when Sydney came over and crowded right it. She began touching the screen and intervening in the game without an invitation. If I had not stopped her she’d have had that video game in her own lap or been in the lap of our guest with her own body between that game and the owner. I can explain and explain but she just cannot help herself. If she sees something she wants, there is no willpower for her to use against those desires. I can only imagine what her teen years and adult life will be like. It is a constant worry for me.

I know Sydney can learn rules and abide by some of them but I’m not sure why some are easier for her to obey than others. We have a pool and she never goes near it unless she is given permission. She is able to behave herself (for the most part) during worship services. She doesn’t hit other people or tantrum. She is polite most of the time. Her ability to abide by some rules and not others has to have something to do with her ability to plan. There is that frontal lobe again. Being able to think ahead to the consequences of your actions based on past mistakes is controlled by that frontal lobe. Impulse control is managed by the frontal lobe. Rules seem so much harder for her to obey when there are other children involved. She can go a long time without getting into any real trouble but add a peer and she is going to find all kinds of ways to make that kid holler. She’s quick at finding ways to push their buttons. She invades their space. She plays much better with children younger than her. A six year old is almost perfect, but only one, not two. Although she is ten, age six is about the level she functions at herself. We are so lucky in that we live out in the country. A neighborhood full of children (and adults) would have brought so many challenges with it and so many dangers. Sydney’s playmates are her family members. Oh, and a dog, several cats, two calves, and a gentle old horse. She spends hours outside with those animals and her dolls. Sydney’s imagination is one of the most active I have ever known. Our dog and one of those calves have an amazing bond with Sydney. They do not care how many times she invades their space or how much she talks or how loudly she talks.

Sydney and Pepper

We almost never say “no” when Sydney wants something to eat. Number one: her preferred foods are healthy. Number two: the doctor tells us to push her to eat because she needs to gain some weight. Sydney still tries to hide food and lie about food. I have told her over and over there is no need because she can eat almost anything she wants, anytime she wants. One of the only rules I have is: no food the bedrooms. I often do find food and wrappers and dishes in her room but I do not impose any consequences for it. These issues surely cannot be from her memories of the orphanage when she was probably hungry, because she has no memories of the orphanage. But food issues could stem from anxieties, according to her doctor. I cannot imagine trying to live without the ability to fully control my impulses. What a confusing place the world would be. Trying to understand the rules and abide by them without the damage to your brain is hard enough sometimes when you are little. This little girl has a disability that was 100% preventable. Alcohol to a brain is poison and exposing an unborn baby to alcohol is unconscionable.

Past articles about Sydney: Saturday Morning with Sydney and Life with Sydney

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