Library Woes

I sit here and prepare to write about today's lessons with Levi. I feel a bit slow in my thoughts and actions. Today has been one of the hard days. We made another trip to our local branch library so that my girls could pick up prizes for the summer reading contest. It has become my custom to prepare Levi on the way for the best possible result. Today was no different.

As we walked the less than half mile there, I talked with Levi about our trip. I explained that he musn't run away from me or yell. There was no telling if he was even listening to me. When we arrived, he did not run through the doors squealing with excitement as he's done in the past. So far so good. But it didn't last.

He played a Dora the Explorer kid's computer game and got overly excited while doing so. Inevitably, he made a loud and happy noise. I was sitting about two and a half feet from him, concentrating all of my energies on him. I try so hard to teach him and keep his behavior as appropriate as possible. It's all a process.

At any rate, a librarian or helper to the right of us paused from shelving books and very loudly exclaimed, "Ohhhh NO! We do NOT do that here." I took in her stern face that seemed to be spilling condemnation all over my parenting and felt the stab of pain in my heart. I moved even closer to Levi, just inches away, imploring him with whispers not to be too loud in the library. That kind of constant high alert is so exhausting! I practiced whispering, "Yay!!!," with him whenever he did something special. With all of the speech issues he has, I've got to say that he did a pretty good job imitating me. The problem, I guess, is two-fold: helping him to combat his impulsiveness and helping him remember to act appropriately in each situation.

Levi continued to play his game with frequent reminders from me to keep the noise level down. Once again, another library worker came over and told Levi to keep it down. After getting no response from Levi, the man got his attention (by telling him to look at him) and told him he could not be so loud. He finished up with, "Do you understand?" to which I quietly (and with a pained and rather defeated expression) replied, "No, he doesn't." He gave me a nervous look wrought with discomfort. I could tell that he was wondering if he had messed up somehow. It was awkward. And painful.

The hardest part is that this is an almost every time occurrence whenever I bring Levi. The exercise is good for him and he needs to go to these places to learn how to behave. As trying as these trips are, I find them quite necessary. I haven't explained things to any library workers as of yet, but it's coming to that point. Sadly, I am afraid that they will not treat us any differently even if they do know. Prayerfully that won't be the case. In the meantime, I am trying to bolster my resolve to stick this thing out. It is tempting to just stay locked up at home with Levi in our own little semi-controlled environment and not have to deal with people who don't understand. Lord, help me not to give up hope.

I guess I am just aching for a scrap of compassion from anyone. It does make things easier to bear, but I know that I cannot expect things from fallen people. I try not to harden my heart when I think of how others have rarely been scolded when they've been too noisy. I feel singled out and like the workers are shooting me while I'm already down. I guess I cannot expect them to understand unless they are going through what I am. Sometimes the Lord places just the right person in my path to encourage me on this journey. Today was not one of them. But He is still good.

And I look forward to sharing all of the progress that I know we'll make in this area. One day, I will look back and remember what a struggle it was to do something as simple as take a trip to the library. Those days will be a thing of the past, and I will be able to bask in the triumph, momentarily, before squaring my shoulders and moving on to face the next challenge.

Everything's a Learning Adventure

I knew that Levi would love the fountain at the mall tonight. We had just successfully ridden the merry-go-round and I thought it'd be a special treat to see the fountain. What I had forgotten about was all of the work I have been doing with him concerning swimming!!! Yep, that's him in the first picture putting his shoes and socks back on after excitedly stripping them off to go wading in the fountain! What a surprise for Mom! I explained that we were not getting into the water here, we were just going to look at it this time. He readily obeyed, put his shoes and socks back on, and perched himself on the edge of the seat near the water. He did splash his hands in it a bit, but he mostly just watched the water spilling out and studied the lighting. We took time to throw pennies in, which he greatly relished. He had never experienced this before and it was so cool to watch him take it all in. It is such a blessing to live life through his eyes with all of the benefit that his perspective and enthusiam adds. Some days are so hard and others leave me feeling strong and like I can do this with the Lord's enabling. Today was one of those encouraging ones. I am thankful.

Preparing for Walt Disney World

I've been giving a lot of thought lately as to whether a trip to Walt Disney World is even a possibility with Levi. This is something that I would so like to experience with him! I think of ways that it could be so rewarding... and I think of ways that it could be absolutely disastrous.

I am very aware that a trip to WDW with Levi would look a lot different than the one I took with the girls. Gone would be so many of the things we enjoyed, but in their place would be a laid back vacation based solely on Levi's wants and needs. I think that sounds like a wonderful way to spend time there.

Gone would be the shows and faster rides. I'm not thinking we'll stand in many lines for character pictures either. But we can take in everything that is to be seen. There are so many things to experience with all of your senses at Disney! I know he will love riding the bus, walking, seeing everything, and eating the delicious foods. He would love all of the routines like going through the bag search, paying for our food (handing the card and getting it back with a receipt), and boarding the transportation. What I'm not so sure about is the rides.

I think he would like the train and the people mover, but I'm not so sure about anything else. I decided to test his readiness with a trip to our local mall with one goal in mind: attempt a ride on the merry-go-round. Levi was all for putting our money in the machine and watching it spit a token out in exchange. He eagerly picked his token up and gave it to the ride operator. He followed his sisters onto the ride with me close behind. He selected a horse between the two of them and excitedly attempted to climb up. I helped him onto his horse and explained that it was going to go up and down. Well that's all he needed to hear! His willingness to ride all but evaporated as he told me, "No!" The ride began, he stiffened up, screamed, and tried to climb down. I had anticipated this possibility and had asked the operator beforehand what she would do if he screamed very loudly and did not want to continue. She assured me that she would stop the ride to let him off and told me that we could always ride on the bench rather than the horse.

I helped my frightened little boy down from his horse while spinning dizzyingly on the carousel. We staggered in a zig zag path over to the bench and plopped down to enjoy the rest of the ride. Levi watched his sisters go up and down. He looked all around taking it all in. He peered over the back of our seat and delighted in the panda bear that kept dropping below our eye level and then popping back up as if it were playing peek-a-boo with us. Finally as the ride began to slow, Levi jumped up and ran over to a horse. I asked if he wanted to climb up and he said, "No." I didn't push it. I strategically placed us in a safe position to stand with our hands on two horses to balance ourselves momentarily. As I prepared to finish out the last time or two around standing in this position, Levi decided that he did, in fact, want to ride the horse. I helped push his body up onto the now barely moving horse. He went up and halfway down before the horse came to a rest. He had done it! Even though it had been brief, he had done it when he was ready.

Even better, the operator, having taken the whole scene in, decided to give us another whirl around. I told Levi that we were getting ready to start up again, to which he stiffened up and became anxious. He did try to climb down, but I encouraged him and helped him feel secure. He quickly adjusted to the up and down rhythm and settled in for a ride! It was a great victory for us. As it turned out, the operator "happens" to work with children with autism. We talked with her about our Disney hopes and she asked if we would fly or drive. Well... that's another big thing that we've been thinking about! But I musn't get too far ahead of myself. As far as today goes, we rode the merry-go-round, which means that we can most likely add Prince Charming's Carousel to our list of rides that we could feasibly ride at WDW. That's a start.

And, by the way, upon exiting the mall, Levi tried to hop another ride on the merry-go-round! And we're off....

Another step in swimming

Just look at my little guy in these pictures! Taken on our very next trip to the lake, Levi knew exactly what he wanted to do as soon as we arrived. It's all about him battling his fears and doing things when he's good and ready. He progressed from sitting in the water the last minute of our swimming trip to getting right in and laying down on his belly to frolic the next visit. And I was further surprised to observe him paddling his arms and kicking his feet. He is such an observer. He watched every single thing - very few things escape his attention. He amazes me.

Now that he is liking the whole swimming thing, we are keenly aware of how closely we must watch him. Like I've shared before, there is a constant state of high alert in anything we do together, and swimming is certainly no exception. My heart feels like it will burst at times with everything that we must plan for and think about. What a relief to know that the Lord never grows weary and is strong in every way that I fall short.

I vividly remember asking my ABF for prayer when Levi was a toddler and constantly putting himself in danger. I was so afraid that he was going to die. I don't think that most people think enough about what a gift each day is for us. For me, for anyone in my home - every day is a gift.

Lord, thank You for the gift of life. For each day I've been blessed to share with my family. In the exhaustion of parenting Levi, it is comforting to know that I am not alone. Further, I am comforted in knowing that you have a set amount of days for each of us. Give me grace to live every day to the fullest, trusting You more and more. I once again place my sweet little guy into Your capable hands knowing that You love him even more than I do. In the strong name of Jesus I pray, Amen.

Sitting Down

The new thing in our house this summer has been swimming. I grew up with swimming outings sprinkled throughout the warm summer months. It was not until recently when our family got our first ever swimming pass to a local lake, that I began to realize just how much we've been missing.

I chronicled in my last post about my attempt to "help" Levi get used to the water. Unfortunately, it was not according to his timetable and didn't go well. The highpoint of that trip was the discovery of "The Cup." The Cup was a more incremental way of allowing Levi to wet himself and enjoy the water without actually having to jump right in, so to speak.

We visited the lake again yesterday and I cannot believe the difference "The Cup" has made. Where once, Levi spent the majority of his time on the playground or sitting listlessly on the edge of the water, zoned out, my little boy is actually enjoying the water. Upon arriving, the first thing Levi did was take his cup and pour water over his head! Next, he immediately began wetting his shorts. The wetting the clothing part is fairly miraculous in itself.

My oldest son came with us just to help with Levi so that I could let my guard down a bit. Levi loved that! I think he felt secure and he loved having his brother devoting his every second to him. I was surprised to see him actually wade in the water to about the mid-thigh point... without hiking his shorts up on his legs until they looked like green and white underwear!

We were blessed that our church gave us beach toys after our recent VBS, which gave Levi even more to do. I had been meaning to get him a bucket and shovel for weeks, but had never managed to get around to it. My heart sang as I watched his eyes light up after seeing the toys we had brought him for swimming. It was truly great. One of those toys was a red swim noodle. We did not, at first, offer the swim noodle to him, thinking it rather useless since he would barely get into the water. After seeing him wading in the water, though, I decided to give it to him to see what he would do. What he did was play like crazy with that noodle! He had seen other kids with them and, besides, it was great fun.

When it was time to exit the lake for the night after the final call from the loudspeaker, I almost walked past a little boy near the stairs. It took me a second to realize that it was Levi because there was something just a little different about where he was. Normally, he would sit perched at the top of the stairs. He was at the bottom, though. But there was something else that didn't seem quite right. Then it hit me! He was sitting in the water! This had been my goal all along, and he got there in his own timing. I was thrilled to see him finally taking advantage of the water, seeing how much he loves everything about water at home.

The little boy I brought home last night was as content as could be. He had played his heart out and become a little less afraid. I think he was proud of his accomplishment and we let him know how happy we were for him. I realize that I will have to be especially vigilant in watching him now that he is getting in the water more. Lord, help me keep my little guy safe as he enters into this childhood activity that we've all enjoyed at one time or another. I know that I am not perfect in my ability to protect him. I need You to be His Protector, Lord, and enable me to do the best I can through the power of Your Spirit. I place him in Your capable hands. In the name of Jesus I pray, Amen.

A Reminder Not to Rush

It was unbearably hot today, which warranted a swimming trip to beat the heat. I learned today that it's not a good idea to try to carry Levi into the water to cool off. Just so you know, he will scream as if he is dying, stand frozen in the water, terrified by its movement, and scream even more if you realize your mistake and try to move towards him to help him out of the water... while the other swimmers stare at you like you are the worst mother in the world. Sigh!

Levi adores water, just not getting into it. He compulsively washes our dishes and loves to wash his hands. He has no problem with baths whatsoever either. It is such a mystery to me why he will not get in the water for swimming. At first I thought it was the whole getting in the water with your clothes on thing. I reasoned that it may be confusing to him since we do not bathe in our clothing. I also thought that perhaps he does not like the feel of wet clothing. On scorching days like today, I really wish he'd join us in the water for some relief. And that's why I tried to help him...

I have learned that Levi must move according to his own timetable. Most often it seems that he takes a very long time to adjust to the idea of something. Realizing the gravity of my mistake in rushing him with the swimming, I had to take things even slower. He allowed me to "wash" his face with my hands that had been dipped in the lake. Then he allowed me to "wash" the top of his head, neck, under his arms, etc. Each time I used a bit more water until finally I was cupping water over his back and over his head. I was telling him how it was just like a bath. I was so pleased to know that we had figured out a way to help cool him off with the water.

We really made headway when I decided to give him a cup. All I had to do was tell him from time to time to dump some on his head or neck or wherever. He was very good about going along with that. And he seemed so much happier to finally be enjoying the water with us. He was able to progress to the place where he put water on himself wherever and whenever he wanted, not even minding the wet shorts for the first time ever. Beautiful progress.

Lord, thanks for teaching me even more today. Forgive me for trying to rush Your timing for Levi. Help me to wait on You, trusting You for our outcomes. Please bless this learning process more than I could ever imagine. I place my sweet Levi in Your loving and capable hands. In the name of Jesus I pray, Amen.

Close Call at the Library... Again

The very first post for this new blog!!! It will not be anything fancy or even contain any photos. I'll give an explanation of the title and share my first of many Levi stories. First, the name. I chose this particular name for a few different reasons. On the homeschooling front, we'll be going into unchartered territory in a few months. I thought that I had experience with teaching children with special needs, but have quickly realized that Levi will be about SPECIAL NEEDS homeschooling with all caps. I have never dealt with such big delays in a variety of areas. So, I will be Learning With Levi as I teach him. I expect that God will show me day by day what to do, when, how, and why. I will be learning about my son and also about teaching him. He will be learning and I will be sharing a lot of that with you as we go along. Lastly, I will continue to learn and share about how the Lord is refining my character as I go through life parenting a child with special needs. It's gonna be great having this place to gather it all together.

Before I go, I will share about today's outing with Levi. You will quickly learn that just about every outing is one wherein I am on high alert. You just never know how it will go. So much for settling into a nice little routine of kind of knowing what to expect. I have kissed that goodbye long ago. Anyhow... today was a trip to the library. The big library downtown. We have already experienced a disastrous trip to our local branch library complete with Levi opening the fire exit door and setting off the alarm. Did I mention that I also lost him and thought I needed to call the police after running around outside frantically screaming his name?

But back to today's trip to the big library. It has been so incredibly hot around here that the air conditioning at the library was a welcome thought. I did not want to leave my sweet boy at home sweating buckets so I purposed to give the trip a shot with him in tow. I prepared my family on the drive over, telling the girls that they would have to be mostly independent on this trip. My number one responsibility would be to follow closely after Levi's every move. I told him where we were going and that we would get some books. I told him he could not run around or yell. We all hoped for the best.

Upon arriving, we parked in the deck and headed for the elevator. The elevator. We have just recently begun working with Levi on the elevator. He is naturally apprehensive about new experiences and takes a long time to acclimate. We realize this and get him incrementally ready. For instance, he finally let me cut his hair with the clippers right after his sixth birthday. Hair cuts up to that point were very stretched out and consisted of much crying, coaxing, and finally someone just holding him still while I did it. But this is about the elevator and that went well. It is one where you can see outside of it while you go up and down. He kind of likes it but is a bit anxious about it at the same time. Once we get through the elevator, it is time to cross the bridge into the library where you can see the downstairs underneath. This has been problematic in the past because Levi is afraid of heights. He was not able to complete a hike two years ago because it was on a cliffside and he could see that he was up in the air. He would typically drop to his knees, bow his head, and crawl back in the direction we had come. This happened at the Christmas Tree Festival, too, when he saw that we were on the second floor and the first floor was visible over a handrail. Nothing like your child hitting the deck amongst hundreds of festive folks and screeching unbelievably loud.

Well, we've been working with him on the library bridge over the last few visits, and he actually walked across it with very little hesitation today. Thank You, Lord! He made the obligatory trip to the drinking fountain - always a must - and also a trip to the bathroom. After an intial fear of bathrooms in other places, he now loves to use every bathroom he comes upon. That even means the icky porta potties when we're hiking. Sigh! Hey, it's progress and I'll certainly take it. We finished with the whole bathroom thing and began exploring. It didn't take him long to find the kids' computers and bring up a Sesame Street program. He happily played until we needed to go find Elijah and check out before our parking deck time was up.

Going to find Elijah is always the worst part of our visits since he is usually in the teen section... on the third floor. Levi loves to noisily gallop up the stairs and I am happy for the exercise for both of us. Today, though, I was feeling tired. I made one and then two trips up and down the stairs without finding Elijah. I finally sent Dara-Grace up the stairs a third time because she said she could see him up there. Unfortunately, Levi took off after her and I decided to let my guard down for a minute. I watched them ascend. Watched Dara-Grace's hand on the rail as she walked around to the back of the library section. But where was Levi? I didn't see any sign of him. Then I caught sight of his head coming out from the bookshelves. Man, I was gonna have to go up there before he took dozens of books off the shelf! I headed up the stairs and noticed Levi walking over to the handrail with a book in his hands. Then to my horror, he hoisted the book over his head and prepared to throw it over the edge of the third floor. I am imagining all the damage the book can do on its way down through the second and to the first floor since it is an open space. Thankfully we were able to halt him from letting go of the book in time and were able to retrieve him. That was a close call! But it was just another instance of learning with Levi.