Running to Finish, Not to Win

Try to fit the pieces together, but perfection is my enemy.
- Free to be Me by Francesca Battistelli -

It's time for me to admit that I'm a perfectionist. I would prefer that I made no mistakes and those who know me well would say that I have difficulty admitting it when I do. My parents didn't demand perfection from me as a child, but I demanded it of myself. One of the most difficult things for me to accept, at the time that it occurred, was getting my first "B" in high school, as a junior, and ruining my chances of being a valedictorian.

Even though I know that I am not perfect, I continue to struggle with being unable to achieve perfection. This is particularly disturbing as I attempt to put the pieces of my life together. When a piece doesn't fit the first time, my tendency is to abandon the piece all together. It must not be a part of this picture. Or, if I am unable to see the image on the piece clearly, wondering "How will this fit?"

For example, when I began formatting this blog, I was frustrated by learning the blogger language and had trouble with the daunting task finding a look and concept that made sense. I thought many times about giving up, telling myself that I was crazy to even attempt this. How did this blog piece fit into my life? Although the answer is still unclear, I push forward, twisting and turning the piece until it fits. Because, ultimately, I have faith that it does fit.

I believe that I am supposed to be here, writing, for myself and for those who choose to read. It is also my belief that although I will never be perfect, as defined as faultless and supreme, I can be perfect, as defined as suitable or well-done. (There I go with the synonyms again...just love the thesaurus!)


On Easter Sunday the pastor of my church spoke on Hebrews 12:1-3. He made a statement that stuck with me, he said we are not "running to win,  we're running to finish." So, I encourage you, as I was encouraged, to "move forward" and "endure."

... let us throw off everything that hinders and the sin that so easily entangles. 

And let us run with perseverance the race marked out for us...

- Hebrews 12:1 (NIV)

His master replied, 'Well done, good and faithful servant! 
You have been faithful with a few things; 

I will put you in charge of many things. Come and share your master's happiness!' 

- Matthew 25:21 (NIV)

Footprints

This was one of O's gift to me for Mother's Day. He actually let someone - granted it was a trusted adult, in a trusted environment, but still - put paint on his feet. Then, he kept it on there long enough to make a print with it.

Such an awesome gift! Especially from a kid who, for the longest time, would not even go near a table if it held paint supplies, as if the paint held some type of poison or was dangerous in some way. He really was that fearful.

So be strong and courageous! Do not be afraid and do not panic before them. 

For the LORD your God will personally go ahead of you. 

He will neither fail you nor abandon you. - Deuteronomy 31:6 (NLT)

When I found this verse, I knew immediately it would be my prayer for O. I will share it with him one day.

My Boy and His Bike

A little over a year ago, I could not get O on a bike. He wouldn't even sit on it and let me push him. It was just not happening. This was a huge concern for me...what little boy doesn't ride a bike?

So, we made this a goal. We worked with him. First, just sitting on the bike. Then, sitting on the bike and having someone push or pull it. Once he was comfortable with this, it became time to teach him how to pedal and steer. This was not easy, especially for a kid with problems with motor planning, meaning...he can see what you want him to do, but has difficulty getting his legs, feet, etc. to actually do it.

Once O started preschool, this became part of his weekly routine, to ride on the back of a two-seater or pedal one himself. Gradually, he got more and more comfortable with pedaling, steering and stopping a bike, at school and at home. He even asked me if he could get a bike for his birthday. He actually wanted a bike! So, of course we got him one. It's not a huge bike, but it looks like one a "big boy" would ride, as that was one of the criteria I was given. Check out this photo from the morning of his birthday...

As you can tell, he loved the bike! And, after thirty minutes of riding the bike in circles around the island in our kitchen, the motor skills associated with this new bike became part of his motor-memory and he was ready to ride...anywhere!

Courage is being scared to death - and saddling up anyway! - John Wayne

All His Stuff

When O was little, he did not like stuffed animals. When I say he didn't like them, that is an understatement. He had a very intense negative reaction to them. So much so, that he would not even go in the same room with a few of them. He especially disliked the really soft, fluffy ones that looked and felt like hair. 


There was one blue elephant that the girls and I fell in love with. It was given to us before O was born and was made out of the softest material. We loved it...he did not.

Although he still is not fond of dolls with hair - he finds the girls' Barbies particularly aversive, just too much hair - he now enjoys cuddling with his stuffed things. He has a favorite bear, two pillow pets, a stuffed Thomas the Tank Engine, and many more. Check out this photo I took last week during nap time.

As you can see, his bed is FULL of stuffed things. There are even some that can't be seen in this photo. And, more are added daily.

Although loving stuffed animals isn't one of those critical life skills, it is something that makes life enjoyable. And, now when O tells me every night, before I leave his room, "Mom, when you leave I'll be lonely," I can say, "You won't be lonely. You have Teddy and Thomas and Piggy and Pluto and..."


I name every one of those stuffed things, and, before I know it, he's fast asleep.

Sand and...More Sand

Have you ever been in a situation so long that it is difficult for you to keep perspective, where you are constantly focusing on what still needs to be done that you forget about all you have accomplished? That's where I've been finding myself lately. While I know that our life is far from perfect, I have decided to become aware of how far we have come in the past four years. So...

This is the first post from what I'm calling, Praise the Progress Week. This week I am focusing on milestones, looking for the positives and honoring the advancements O has made on his journey as a boy with sensational needs.

"There are only two ways to live your life. One is as though nothing is a miracle. 

The other is as though everything is a miracle." - Albert Einstein

I love the beach! M loves the beach! The girls love the beach! So, it only makes sense that O would love the beach, too. Right?

As you can see from the photo, O did not like the beach. In fact, he showed an extreme dislike for it. That photo was taken when O was 13 months old, during his first real trip to the beach. We had taken him before, as an infant, but he spent those trips cradled in someone's arms, most likely sleeping or being fed, not experiencing the sights, sounds, and textures of the beach.

For a long time after that trip, two years to be exact, we avoided the beach. After all, it was not very fun, when two active girls, who love the water and the sand, had to cut their playtime short because their brother wouldn't stop screaming. But, we missed the beach.

So, last summer, during our family vacation to San Diego, we tried the beach again. We were very careful to search out the best spot. As M drove the car around San Diego, I scoped out all possible beach locations. Finally, we found it. It was a small patch of beach that was very near an area of grass and a play structure. That way, if the sand was a no, we had back-up.

Although it wasn't an instant love, check out these photos...

What progress! I was so thrilled, I sent photos to O's previous teachers and OT, who had worked so hard with him on experiencing and tolerating different textures. This was a real milestone for him, for all of us.

Hoping this means we can be a beach family again!

Here Comes Summer

As summertime approaches, I am feeling more and more stress. What?! Why!? Summer is my time off from work, the time when I can focus on being a mom, without the daily stresses of my other job. But, summer brings with it many challenges, some of which I am not ready to face.

Summer brings the end of another school year. My girls love school. So, seeing a school year end is not easy, especially for E. I'm not sure how much she would love school if she didn't love her teacher. Each year she has developed such a connection with her teacher that it breaks her heart to say goodbye. Last year, I watched her walk away from kindergarten with gut-wrenching sobs. She was crying so hard, she could barely walk. It was the worst I have ever felt for one of my children. It hurt! I am anticipating another tear-filled afternoon on June 8th. She just loves her teacher!

Summer brings change. Change in our schedule and routine. Change in our sleeping and eating habits and in our daily activities. While this change may be welcome for some in our family, this type of change is very difficult for O. Routine and structure help him cope. When those things that have become constants change, the unpredictability is killer. I mean, he has trouble when you give him the wrong plate at dinner or when you ask him to pull up his pants before he flushes the toilet. Can you imagine how he feels when mom isn't going to work and sisters aren't going to school everyday? While he loves having us around, it makes things confusing and different. And, different is difficult for him.

Summer also brings projects, tasks that I have put off, thinking that they would be easier accomplished in the summer. One thing I've put off is working on O's eating habits. I would really like for him to try new foods, so that he's not eating the same three or four things everyday. This will be a long process, since he does not even leave unwanted food items on his plate, let alone put them near his mouth. Although I have been collecting ideas on how to approach these food issues and I know it needs to be done, it's not something that I am looking forward to.

Summer brings swim lessons, Vacation Bible School, family vacation, more time in the car, a month off of preschool...the list goes on. There's also the challenge of occupying three very different children with entertaining activities, that are educational and not too overwhelming. Why have I not started planning or preparing for any of these things? I am trying to take it one day at a time. Unfortunately, I am running out those days...summer will be here soon.

Yesterday, when I wrote this post, I had no resolution. Just stress. Then, due to the circumstances of life, I was not able to post. It was late last night that this verse came to me. I have been rehearsing it in my mind ever since.

We are hard pressed on every side, but not crushed; 

perplexed, but not in despair; 

persecuted, but not abandoned;

struck down, but not destroyed.

- 2 Corinthians 4:8-9

Now, even though my issues are nowhere near resolved, I have a renewed sense of hope and am confident that I am not in this alone!

Making Impressions

I work with students who don't understand how to take the perspective of others. They don't understand that since I am a separate person from you, my thoughts are different from your thoughts, you don't automatically think the same way that I do.

One of the programs I use to teach this concept focuses on the idea that we are constantly making impressions on others, when we meet them and interact with them. While the program itself has a lot of components, the basic idea is this...you make an impression by how you look, what you say and what you do.

Working on this program with a student this year has me reflecting on these three things in my life, thinking about what kind of impression I'm making. In person, and now with this blog, in writing, what kind of impression am I making? Not only that, but how is it possible to balance the reality of making impressions with being true to yourself?

I will admit, I don't often let people see the real me. There are few people that I feel comfortable with, that I trust enough to just be myself. It's not that I intend to be deceitful or to pretend to be something or someone different. It's more about discomfort and anxiety related to what the person is going to think or what kind of impression I'm going to make.

Because of my own fears related to being liked and making positive impressions, I've tried to instruct my children on the importance of being true to who they are, while, at the same time, paying attention to what they say and how they act and respond when something goes their way or when it doesn't. I am even beginning this with O, trying to teach him that a natural consequence of his rigid behavior may be that friends don't to want to play with him. This is a difficult lesson, but one that, I believe, is easier to learn at home first.

There are many times in my own life, however, that I focus too much on a specific part of me that may be making an impression. For example, there have been many times when I've tried on multiple outfits in hopes of making a positive impression. I also worry about saying or doing the right things.

But, is there truly a "right" thing? It's a lot about perspective. Sometimes, what we think makes an impression, maybe our appearance or the type of clothes we're wearing or whether or not we have on make-up, isn't the thing that really makes the impression.

In March I had a birthday. I received many birthday messages in the mail, on the phone, and through Facebook. While I got many nice birthday greetings, there was one that struck me as special, that I was very grateful to receive. The message was:

"Happy early birthday to a wonderful person. I'm so happy our paths have crossed!!"

Wow! I couldn't believe it...this person was talking about me. This was not from someone that I'd ever tried to impress, but I'd obviously made an impression. I don't share this message to boast, but to say that receiving this message was such a huge compliment. To know that this is the type of impression I made, without extra effort, by just being me, was such an encouragement.

So, a lesson I think I have learned in all this...when we think we're doing nothing, we really could be doing something, something really special. And, maybe it's the times when we are trying hard, too hard, that we really don't do anything at all.

You never know how what you do or what you say will make an impression on someone. So, the next time that you feel led to do or say something, be true to who you are. Do it. Say it. It may make someone's day.

So encourage each other and build each other up, just as you are already doing. 

- 1 Thessalonians 5:11 (NLT)

The Waiting Game

Recently, O and I were shopping at Target. This is something I rarely do, at least with him, as I always end up spending extra money on just one more train. I still haven't figured out a way to prep him for a Target shopping trip that doesn't include buying him something. This expectation started when he was younger, when we could find an assortment of Thomas movies on the $5 rack. Unfortunately, I'm pretty sure we now own every single Thomas movie ever made, so the $5 rack doesn't work anymore. That is why, as you can understand, I usually go without him.

Anyway, shopping with him that day was unavoidable. So there we were, finishing our check out, when O looked at me and, pointing at the man standing behind us, said, "Mom, it's the man's turn now." I said, "You're right. Now that we're finished, it's his turn." Then, he said, "Mom, that man was waiting so patiently." I concurred, after all, the man was waiting patiently.

It struck me at that moment what I had been trying really hard to communicate with O lately, the importance of not just waiting, but waiting patiently. This is not something that is easy for many preschoolers, but especially for O, it is a huge challenge.

Lately, he has been extremely resistant to waiting, even for the smallest amount of time. I'm not talking about having to wait days, just delaying long enough for me to walk from one end of the kitchen to the other to get the milk from the refrigerator, sometimes just a few seconds.

His response to waiting is often yelling, "But, waiting is boring!" How do you respond to that? I've tried saying, "I know it's hard to wait, but I need to ..." This just makes him more upset, yelling, "Waiting is not hard, it's boring!" I'm not sure where and when he came up with this phrase. Maybe he means he is not interested in waiting, because it's irritating or tiresome (to use some synonyms I found for the word "boring"). Don't really know, but he is adamant about using the word, so I'll go with it.

At times, waiting is "boring" for him because he has an expectation of what was going to happen and how long it will take. Most of time, he expects things to happen instantly, and when they don't, which is not according to his plan, he has difficulty coping. Because of this, I have been working with him on waiting, giving him opportunities, in a safe and comfortable environment, to experience waiting. This is exhausting, as he is not the child who will wait quietly. He continually repeats his request, at an increasing volume, until the waiting is over. Although we often use a timer to give O a more concrete way of understanding how much time he has to wait, that doesn't always work, especially in those situations when we can't put an exact value on the wait. 

Waiting is not easy, I suspect, for any of us. I know I have difficulty waiting for answers to questions or resolutions to problems, especially when I have an idea of what those answers and solutions should be. But, waiting is a part of life. We wait in line, wait on answers to prayers, wait for our children to become independent, wait to be seated in a restaurant, etc. We must all learn to wait, patiently. If we don't, we end up like O, so overwhelmed by the waiting that we often lose sight of the goal, the original object or activity we wanted in the first place.

It is obvious to me, from the Target example, that O has a pretty good idea of what it looks like to wait patiently. However, he is not yet at the point where he is ready or able to do this, since he prefers to have his demands met instantly. I'm not sure when or how he will learn this. I know it will take time. I'm still searching for new ways, new strategies that might make waiting more enjoyable, less "boring" for him. I'm still waiting...

But those who wait on the Lord shall renew their strength; 

They shall mount up with wings like eagles, 

They shall run and not be weary, 

They shall walk and not faint.  

- Isaiah 40:31 (NKJV)

No Shots Today

So, I am a big, fat chicken! Took O and E to the doctor for their well-child check-ups and the doctor offered to take care of O's kindergarten shots, even though he still has another year of preschool before he will be kindergarten age. Dr. K said that these shots can be given anytime after a child turns four and still count for kindergarten readiness. This sounds like good news, except that...I'm a big, fat chicken!

Although Dr. K is not technically allowed tell me what to do, he strongly encouraged me to consider having the shots. After all, most insurance companies don't pay for two well-child check-ups in one year. However, I knew that this wasn't the case for my insurance. I had checked into this two years ago when E entered kindergarten, since her birthday is also in April and kindergarten registration is often in March. So, I really didn't have to worry about that.

What I did have to worry about was that, not only had I not prepared O for this doctor visit - the time had gotten away from me - but I had definitely not prepared him to get shots. In all fairness, he did really well with the visit, largely in part because he got to watch his big sister bravely go through all of the same things he was going to have to do. You should have seen his face when the nurse mistakenly asked him to get weighed first. I didn't think he would let go of me. I calmly asked E if she would go first. Being an awesome big sister, she complied.

So, after a relatively easy visit, I couldn't imagine having to endure four shots. None of us were prepared for that. So, no shots. But, the whole way home I berated myself, internally of course, about my lack of courage. Why didn't I just get the shots? Wouldn't it have been easier? Aside from the screaming four year old I would have had to restrain, on my own, while the "shot lady" asked me, not so politely, to keep him still, it would have been okay, right? No, it was just too hard!

This is one thing that I continually struggle with as a mother of a special needs child...when and how far to push. So, sometimes I just don't push at all. I know that it's not the best solution, but it is at times the most comfortable solution for me and for O.  It's possible that the shot situation is not the best example. I mean, any mother in the same situation, might make the same decision for their child, right? But, I wouldn't have, at least not for my girls.

However, I am famous for this, for taking the easy way out, especially when it comes to O. I have often let his teachers and therapists do the pushing, and when I am confident that he has made significant progress, I can then help him into mastery and with generalizing that skill. It's the initial push that kills me.

Why is this so hard? Because, I want life to be easier for him. Because, as much as I love him and appreciate him for who he is, I wish things were different. I don't want him to have to endure the issues that are a part of his make-up. I don't want to be the one who makes things harder. Even though my intellect knows he needs practice with these hard things, my heart says something entirely different.

In most areas of my life, I lead with my head, not my heart. I am all about being rational and using practical and logical reasoning. With O, I am in constant battle with my emotional side. I am hoping to win this war, in time.

Living in Las Vegas

Have you ever been in a place that made you uncomfortable? That gave you a feeling like, I just have to get out of here!? 


That's how I felt last month when I was in Las Vegas. We went for A's cheer competition. That part of the trip was great. I loved watching her perform, especially since she loves it so much, the joy just bursts from her! But, out of the two days we were there, the competition only took about 10 hours total, which left us with a lot of down-time. It was during that time that I felt extremely uncomfortable. Walking down the street, sitting in restaurants, navigating through casinos, it all gave me a very uneasy feeling.


I imagine that this is how many of my students and, in some cases, my own son feel a lot of the time. They are part of a world that they really don't fit into, that provides them with too much sensory input to cope with, very similar to how I felt in Las Vegas.

My favorite book on the subject of sensory integration is The Sensory Sensitive Child. It is not a technical book. It is a book written for parents and provided me with tremendous insight and strategies to use with my son. This book was written by two women, mothers of children with sensory issues, who are also psychologists. This was the perfect book for me to read.

These women, while describing their own children, were describing mine as well. Within the book, there were several statements and reflections that resonated with me. They said, "...the child with sensory modulation difficulties experiences the world as an uncomfortable, out of control place in which it is hard to figure out how to respond...Our lives were full of argument and dissent about the simplest everyday things." Wow, this is my life!

My favorite occupational therapist, Ms. H, described it this way....imagine yourself in a restaurant, it's crowded, there are many people moving and talking, and many things on the walls. Most of us, even in this environment are still able to carry on a conversation with those in our own booth. We can tune-out all the extraneous noises, lights, movements, smells, etc. Those with sensitive sensory-integration systems cannot. They hear every noise, see every movement. This makes focusing and functioning very difficult. It also can give them the "I have to get out of here" feeling. This is one reason why O may ask repeatedly when we are out, especially in an unfamiliar environment, "Is it time to go?"

Even for us, as typical adults, the longer we remain in an environment that feels wrong, the more agitated we get. And, consequently, the more we may say or do things that will enable us to get out. Now, my need to escape Las Vegas didn't have everything to do with my sensory experiences, but it gave me an insight into how many of the children I interact with, feel daily. I also realized that there are many things that I have studied that I understood intellectually, but until having experienced them myself, I did not truly understand.

The authors of The Sensory Sensitive Child also describe a "dysfunctional sensory integration system" in which there is a "malfunction between the brain's translation of sensation into meaning and action." In other words, the brain is unable to adequately recognize sensation as either important or insignificant or dangerous or safe. This misinterpretation can lead to illogical or inefficient responses.

An example from my own life...O's recent struggle is visiting public restrooms. He has used public restrooms before. In fact, once he started using the "big potty" at home, I made sure that I had him using different toilets, so that he wouldn't get too used to using one kind, in one place. However, recently he has become anxious about the sound an unfamiliar toilet makes when it flushes, often asking, "Is it going to be loud or quiet?" This creates extreme fear in him, so much that he will do anything to avoid using an unfamiliar restroom. This is one of those illogical responses. Obvious to us is the fact that the sound of the toilet flushing is not dangerous, but not to O.

The ironic thing about Las Vegas...when I posted photos, etc. on Facebook from there, it often stated my location as, "near Paradise, NV." For me, Las Vegas is about as far from paradise as I can imagine! I was very grateful to be able to leave after one weekend, but was saddened for O and others like him who will never truly escape their dysfunctional sensory integration systems. They aren't just visiting Las Vegas, they are living there.