Shooting for the Moon with Ryan

Life in the World of Autism


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Graduation Brings Milestones and Memories

Ryan graduated from Occupational Therapy today. It was a little sad to say good-by to everyone in the office. Ryan and I have been going to Touch Stone Therapy once a week since he was one and half. At one point, we were going twice a week. It started with physical therapy. Ryan was a late walker. Then we moved onto O.T.

Ryan needed lots of work with his fine motor skills. I remember him learning to stack blocks, pulling small objects out of putty, and reaching into buckets of sand and rice. Later, he practiced drawing and writing. But most of all, Ryan needed help with his sensory processing disorder. Ryan was hyper sensitive to sound. Every time the phone or doorbell rang, Ryan cried. He didn’t want the tv or radio on, and we had to pull our clothes out of the dryer before the bell went off. He didn’t want to leave the house. He was on sensory overload in stores and restaurants.

So we began a daily sensory diet of brushing, swinging, and listening therapy. We brushed Ryan’s arms and legs with a little rectangular plastic baby brush. This helped to desensitize him. I have pictures of Ryan sitting on his indoor swing listening to his special cd’s through his headphones. The music helped him to tolerate different sounds.

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But when I look back on our years at Touchstone Therapy, I think what will always stand out for me is the time Ryan spent in feeding therapy. I have to thank his therapist, Courtney, for all she did to get Ryan to begin eating a healthy diet. Because of Ryan’s sensory issues, he had a very limited diet. He couldn’t stand certain textures in his mouth. He had an aversion to the different shapes, colors, smells and temperatures of food. For a long time, all he would eat were cut up hot dogs, vanilla yogurt, and purple grapes.

It took Ryan a year and a half of weekly therapy sessions to begin making progress. Each week, Ryan played with the food, put it up to his mouth, smelled it, put it on his tongue and spit it out. It was huge progress when he started chewing and swallowing new foods. Now Ryan eats a normal, healthy diet.

Today, Ryan walked into the waiting room with his graduation certificate in hand. I tried to take a picture of him with Courtney, but Ryan kept running away. He is terrible about getting his picture taken right now. All it takes is for one person to try to take his picture with a camera that has the flash on, and he refuses to get his picture taken for a long time after. He is also going through a phase where he does everything he can to give his Mommy a hard time.I tried to secretly snap a pictures when he gave Courtney a hug.

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Later, when we were sitting in the car to go home, I showed him that my camera doesn’t flash and tried to take a picture of him in the back seat. He did not want to look.

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Ryan is still sensitive to sound and prefers to stay home. But now he’s tolerating trips to the store and restaurants. He’s even walking through the airport and flying to see his grandparents. He has come a long way.

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Gift Buying Can be Easy if Your Child is on the Spectrum

IMG_1550Ryan finally opened his Easter gift yesterday, about a week after Easter. He devoured his skittles, M&M’s and lollipops, the only three candies Ryan likes. (Children on the spectrum are very particular about what they will eat.) But he would not touch his wrapped present. He has to be in the mood to open it. And I have to tell him what’s inside, because he doesn’t like mysteries. How does he know a snake won’t jump out at him?

In a way, buying presents is easy for many parents of children on the spectrum. We don’t have to buy them. Many children with autism just aren’t interested in toys. Presents never had a lot of meaning to Ryan. But I, like many other parents I’ve talked to, just can’t not put a present or two under the tree at Christmas or a present in the Easter basket.

Again, Ryan has to be in the mood for present opening. That happened yesterday. And, as he gets older, he’s finding that he actually likes the presents he’s unwrapping. He loved the basketball hoop that can be placed over his bedroom door. Ryan fell in love with basketball after participating in “All American Athletes,” a local non-profit program for special needs children that meets weekly and teaches kickball in the fall, basketball in the winter, and t-ball in the spring. I’m so thankful for that program and the volunteers that helped Ryan become interested in sports.

Easter is a little different when you have a child on the spectrum. We were careful not to mention the Easter Bunny, because Ryan would only worry about a large bunny entering his house in the middle of the night and making a lot of noise. But on Easter morning, we told Ryan that he had an Easter basket. He wasn’t the least bit interested and ate his breakfast and got dressed before he even glanced at it. He didn’t really look at it until after church.

By the way, Ryan LOVES church. We couldn’t be happier. Ryan loves the structure and the predictability of it. He now likes the music (the organ used to be too loud), the children’s sermon at the front of the sanctuary, and Kid’s church. Ryan is finally walking to the front of the church on his own when it is time for the kid’s sermon. In the past, I walked him up the aisle and showed him where to sit on the floor in the front. The first time, Ryan wanted to run up onto the stage and join the choir. But now Ryan is walking to the front all by himself and actually telling me not to come.

Church hasn’t always been this easy. We could attend church when Ryan was young enough to be in the nursery. But when he got too big, we faced a lot of opposition from our little boy who is sound sensitive and couldn’t handle the organ music, the singing choir, or the amplified voice of the minister. For awhile, we just didn’t attend church. Then, when we felt he was ready, we slowly introduced him to the church service. We walked through the sanctuary on a Saturday when it was empty. He sat in the lobby of the church several Sundays where it wasn’t as loud but he could hear the sermon and music. Ryan’s ABA therapist came to church a few times and helped Ryan get used to the service.

Now Ryan is a pro at going to church and loves it. Sean and I spent our Easter laughing about our silly little boy who loves going to church, but has no interest in his Easter basket or present. Life with Ryan and his unique, creative brain is not bad, just different. We wouldn’t change it for the world.


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Celebrate the Small Victories

???????????????????????????????This past Saturday, we took Ryan to Lowes for a kids’ woodworking project. Afterwards, I realized just how much he changed in a year. The first time we did a project, Ryan’s ABA Therapist came along since he really did not want to go. But I was determined to get Ryan out of his comfort zone. He needed to spend more time out in the community where his surroundings might be a lot more stimulating than what he experienced in his own home. We guided him towards the back of the store where we could hear all the hammers loudly banging. Ryan had his hands on his ears and would have run back out of the store if it wouldn’t have been for his therapist. He did make his project, when we could convince him to let go of one of his ears and hold the hammer.

The second time, Sean and I took him. We walked with him to the back of the store, and as soon as we let go of Ryan’s hand, he bolted down the aisle. I ended up chasing him through the store. We finally got him to sit down and we put a hammer in his hand. I’m not proud to say that he threw it across the table and almost hit another child. We ended up leaving and completing the project at home. We decided to wait awhile before trying another project.

But, this past weekend, we tried again. It was almost a year later. Ryan was excited about making a woodworking project. We walked into the store and let go of Ryan’s hand. He wanted to walk by himself. It’s a habit to hold Ryan’s hand everywhere we go since he is a runner and will bolt right into traffic without a thought. Lately, I’ve been letting go more and more. Even in the parking lot.

He headed over to the box of hammers with a smile on his face. He carried the hammer and monster truck project to the table and sat down. He worked on hammering the nails by himself. He was proud of his project in the end, even though it might not look like if from the pictures. Ryan is determined to frown or look away for every picture. In fact, he had to be photo shopped into his first grade class picture because he kept turning his head around.

It’s so important to celebrate the small victories. It’s easy to forget what it was like a year ago and to focus on all the things Ryan still has to work on right now. I know that any type of improvement means that Ryan is learning and growing. I encourage all the autism moms and dads out there to keep a short journal of what your child is doing. Then look back at the entry from a year ago. It will make your day to see how much your child has changed. And your child WILL change, as much as it seems like he will stay the same forever.


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Finding Excitement on a Southern Snow Day

???????????????????????????????Today was a typical snow day in the South. Lots of hype and most everything shut down ahead of time, only to wake up to find half an inch of snow and wet streets! Despite being disappointed that the sledding wasn’t going to be good, most kids were happy just to have a day off from school!

Not Ryan! Snow has no meaning to him. We learned long ago that Ryan doesn’t find exciting what most kids do. Ryan would have been a lot more happy going to school this morning. Ryan loves school. I’m not sure why. He can give his teachers a hard time about doing his work. And yet, he wakes up in the early morning with a smile on his face. He’s dressed and ready for the bus in no time. I’m so thankful that school does not have to be added to his long list of battles. I have to give credit to his teachers and the school. I know we’re extremely lucky to have a public school and teachers who understand Ryan and what makes him tick.

So, Ryan would have been a lot happier going to school today. But I decided that we had time on our hands and today would be a great day to work on our “eating out” goal. Again, most kids look at going to a fast food restaurant as a treat. Not Ryan. “I want to eat at home,” Ryan said when I told him we were going to Hardees for lunch. “We need to practice eating out,” I said. “We are going on vacation this spring and summer and we’ll be eating out a lot. You can do it. Let’s go! It will be fun.”

Ryan wasn’t convinced that it would be fun. But he got in the car. He gave me his little “pouty” face. He continued to pout all the way into the restaurant, while I ordered, and to his seat. But then something magical happened. When our food arrived, Ryan began to eat. And one more very important thing. Ryan did not have his hands on his ears. This was progress. The last time we ate at Hardees, Ryan did not eat at all and sat with his hands on his ears, staring down at the table, his body stiff, the whole time.

Kids like Ryan who are very sensitive to loud sounds and bright lights often keep their hands on their ears even if there is no loud noise. It’s a way of keeping themselves safe “just in case.” It’s interesting that Ryan can tolerate Chik-fil-a. It’s the only restaurant where he will eat and is somewhat comfortable. But there isn’t a Chik-fil-a in every city. Ryan will need to learn to tolerate many different types of restaurants. So, I considered today a success, even if he only ate his fries and not his  hamburger.

I made the experience short and positive. He got lots of high fives. He came home with a smile on his face. I wonder if Ryan will ever be excited about getting to eat out? That would be real progress. But for now, we’ll just focus on what gets him excited now, like getting to see a train go by at a crossing, or counting 25 security signs while traveling through the neighborhood, or seeing a car that looks just like “Mommy’s” car.  Or even getting to work with his ABA (Applied Behavior Analysis) therapist on a snow day. She was able to make it after all. The streets were clear.  “Do you want to play first or do work first?” his therapist asked when she first arrived.” Ryan said “Work first.” Go figure!


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Hugs Would Come Later

???????????????????????????????This morning, Ryan participated in his first school musical on the stage. I could tell he was nervous about it. He didn’t want to talk about the program whenever I brought it up. Last night, out of the blue, Ryan told me he wanted to wear his Lego Movie “Everything is Awesome” shirt to school the next day. Ryan never requests to wear a certain shirt. I explained that he was supposed to wear a blue shirt for his musical. Maybe he thought that if he showed up at school wearing a different shirt, he wouldn’t have to participate.

All the parents, grandparents and friends gathered in the cafeteria and watched the first graders file onto the stage. The assistant teacher held Ryan’s hand and encouraged him to keep walking to his place on the step. I saw some smiles on his face. Good! He wasn’t totally terrified. And he didn’t bolt off the stage in the middle of the performance like I thought he would do. He didn’t sing or do any of the motions, either. There he stood, in the front row of the risers, looking all around at the audience, but not singing a note.

Afterwards I saw his teacher. She explained to me that he did do the motions and mouthed the words several times during practice. I had no doubt he knew all the songs. But to me, it was thrilling to see Ryan, despite his sound sensitivity, participate the best that he could and make it through the whole, over stimulating performance of loud music and loud voices speaking into the microphone. And not once did he put his hands on his ears.

The principal told the parents that their child would be waiting in the gym after the performance for a hug before going back to class. I knew Ryan would not want a hug from me or want to give me a hug. In fact, I knew he would be uncomfortable seeing me. Children with autism need certain routines to be the same. And it wasn’t routine to see mommy at school. Ryan has rigid rules about where people and things belong. Mommy belongs at home. Teachers belong to school. I walked over to Ryan standing against the wall in the gym. I knew he was uncomfortable. It was loud and crowded. All this commotion was not a part of the typical school day. “Awesome job!” I said to Ryan. He turned his face away from mine and motioned for me to go away.

I said good bye, walked out of the building to my car, and drove away, knowing that hugs would come later. Right now i was over joyed that Ryan had made the huge step of being able to tolerate being on the stage.