Shooting for the Moon with Ryan

Life in the World of Autism


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My Top Five Hopes for My son and His New School Year

IMG_3170I remember when Ryan started kindergarten and my biggest hope for the school year was that Ryan would learn to get from the bus to his classroom without getting lost wandering around the school first. I had basic hopes, like he would be o.k. about using the school bathrooms, since it didn’t have the loud automatic flushing toilets and hand blowers. I hoped that he’d take his hands off his ears long enough to get his name on his paper, that he would at least eat part of his lunch, and that he’d survive the first fire drill.

But now Ryan just started third grade. He’s almost midway through his elementary school career, and I can proudly say all my hopes for kindergarten came true and more. He has learned to handle lots of sensory overload, in addition to learning to read, write and do math. He’s at that grade that everyone says is just hard, the big leap. I have lots of hopes for my big third grader this year. But here are my top five:

I hope that this year he finally gets it. I hope he gets why it’s important to do his school work and why an A is better than an F. Ryan doesn’t have that social understanding of school yet. While most typically developing children want to please their teachers, want to appear “smart,” and want to get A’s, many kids on the spectrum don’t care what others think or how they appear to others. They just know that a teacher is making them do work, and unless it’s extremely interesting to them, they don’t get why they have to do it. “Getting it” is a process, and for Ryan includes lots of rewards along the way. My hope is that third grade brings Ryan just a little bit closer to understanding what school is all about.

I hope that Ryan learns to be more independent in the classroom.  For Ryan, independence is that door between the special education and general education classroom. Ryan might need to have his work modified. He might need special supports like check lists, schedules, and visuals. But unless he can manage his learning in a classroom of 22 other third graders, he will forever be spending time in a special education classroom. That’s not bad, but my hope for Ryan is to slowly work his way into the general education setting and one day find himself spending the majority of the day with his peers.

I hope that Ryan will make some friends this year. Ryan is a likable guy. He’s funny and loves to laugh and be silly. He also likes to watch the other kids on the playground from a distance. If they are playing with a ball, he watches closely. When they finally put the ball down and run away, Ryan picks up the ball and starts imitating what they were doing. That’s Ryan’s comfort zone. He’s interested in the other kids, but only from a distance. This year, I hope that he will get the courage to join them at ball, and not wait for them to put the ball down and run away.

I hope that Ryan will continue to love school. Ryan has always loved school, from his very first day of preschool. I know this is something to be thankful for and something that could change very fast. I haven’t always loved Ryan’s school. My husband and I have struggled at I.E.P. meetings. We have not always seen eye to eye with the director of special education of the school district. We will continue to have to advocate for our son and work to get him what we think is necessary for his success. But somehow, all of this has always gone over Ryan’s head. He has remained happy, and I think it all has to do with his caring teachers and their ultimate support of Ryan and his needs.

My final hope for Ryan’s third grade year is that his new teacher will “get” Ryan, who he is, and what he needs. Special needs children are complex, especially children with autism who can greatly vary in their strengths and challenges. I hope Ryan’s teacher will be able to see his potential and his intelligence. I hope she will be able to enjoy his personality. I hope she will let him explore and assert his independence, but I also hope she will be strong enough to teach him limits.

Just as children with autism vary greatly along the spectrum, I know that all parents have hopes for their child’s school year that will vary greatly. May all your hopes for this year come true and may this be the best school year for your child yet!

 

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Thoughts of Inclusion on the First Day of School

IMG_2109Ryan got on the bus this morning and started his first day of second grade. He woke up by himself and came downstairs dressed and ready to go. When was the last time that happened? I have a little boy who loves school, which says so much about the teachers who work with him.

We have been blessed with an exceptional teacher who really understands and knows Ryan. This will be the third year he has been in her K-2 class. She teaches Ryan all of the academics, but he joins a typical second grade class for morning circle, social studies, science, lunch, recess, and related arts. He has a one on three (there are three second graders) aide to help him when he is in the typical classroom. For the most part, Ryan has thrived in this type of setting.

Deciding how to educate a child with autism can be difficult. Many children on the high functioning end of the autism spectrum are also very bright. They can handle the academics. At the same time, they struggle socially. And school is all about being social. Put a child who is delayed socially into a typical class and academics can suffer, unless he gets the proper support.

In the typical classroom, Ryan also has to deal with sensory overload. Bells ring, loud announcements are made, fluorescent lights are bright, and 23 other kids in the same room can feel crowded. Ryan has trouble following teacher directions because he can’t filter out the extra noise like chairs scraping across the floor, sounds in the hall, loud voices, cars going by outside of the windows.

Also, being social has no meaning for Ryan. He doesn’t automatically greet a person because he doesn’t care whether or not the person thinks he is rude. He doesn’t understand the concept of winning because he doesn’t understand why he would want to do better than someone else. He also don’t get why he has to do a good job with his school work, since he don’t understand the social concept of not wanting to appear less smart than his peers and looking like he doesn’t understand. Basically, Ryan doesn’t feel the same social embarrassment that his peers feel.

I thought a lot this past summer about how to best educate Ryan. I’ve been reading about inclusion and what the experts say is best for a child with autism. I’m beginning to think that no expert is as much of an expert on my child as I am. I’m going to have to figure this all out by myself. There are experts who think that autistic children, no matter where they are on the spectrum, should be totally mainstreamed no matter what. I don’t agree. There are too many factors to consider.

However, I had a conference with Ryan’s teacher last week about starting to include him in a typical math class with his peers. Ryan is more advanced in math than his other two second grade buddies in the special education class, so Ryan gets his math instruction by himself. I feel that if Ryan is going to learn more social skills, he shouldn’t spend too much time by himself. Math is also just one hour out of the day, so it’s a good place to start. It’s going to be a balancing act. Ryan will need to deal with the social aspects of the classroom while still being able to learn the academics. It’s something we will need to figure out as we go along. The teachers and I will need to communicate and work together everyday to creatively find ways to help Ryan deal with the obstacles that may come up. That’s what education is all about.


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Baby Steps, Breakthroughs, and Steps Backwards

Most children on the autism spectrum suffer from a combination of anxiety and sensory integration disorder. Put the two together in various combinations and you often get a child who would rather stay home.

And that is what we have been dealing with in Ryan since he was born. It’s so much easier for him to stay home than to go out into the world and deal with the bright lights, loud sounds, and unexpected surprises of the world around him.

Just getting him out of the house and into the community has taken years of baby steps, breakthroughs, steps backwards, and leaps ahead. Mostly, we have been using what is known as exposure therapy without even knowing it. We have been slowly and steadily insisting that Ryan participate in the world around him.

Last Saturday, we took Ryan to a children’s museum for the first time. It’s the kind of museum that looks like a small town. There’s a supermarket where the children can shop for pretend food, a fire hall with a life-sized fire truck, and a doctor’s office with x-rays, scales and exam tables.

Of course, Ryan did not want to go to the museum. His anxiety is higher in the summer when the structure of school is gone. Knowing exactly what he’s doing everyday is calming for him. But we put him in the car anyway and drove to the museum, even though when we got there, his dad had to pull him out of the car and carry him into the museum.

Once inside, Ryan instantly put his hands on his ears and stood next to the wall near the exit. Now, this is actually an improvement for him. Two years ago, he would have bolted for the door and had a huge melt down. The visit to the museum would have been over in 5 minutes.But Ryan stood to the side and looked around him. As he got curious, he began walking around the museum, watching other children and looking at what was around him, with his hands still firmly planted on his ears.

I can’t pretend watching any of this was easy for me. I always hope that Ryan will walk right in and start to play. I was feeling frustrated and sad all at the same time, wanting my son to have fun and enjoy what all children get to enjoy. I second guessed myself and wondered if it was even a good idea to take Ryan to the museum in the first place. Why make him do something he doesn’t want to do?

And I wondered over and over if I was missing something. Could I be doing something to make this all easier for Ryan? Should I explore anti-anxiety medicine again? It does work for some children. Yet the FDA has not approved any of these medicines for children at this time. He’s not old enough for Cognitive Behavioral therapy, although it has proven to work really well for anxiety. And why won’t Ryan wear his ear plugs today? Sometimes he just refuses. I kept trying to interest Ryan in one of the play areas and he kept telling me to go away. So I stood back and watched him from afar.

Then, after 45 minutes of not playing, when Ryan thought I wasn’t looking, I saw him start to smile. He walked over to the pretend bank, got into the pretend car that was parked outside the pretend teller’s window, pushed a button, and made the capsule fly up through the pretend tube. I could not believe my eyes. I really thought we would end up leaving without Ryan playing at all.                                              .IMG_1795

Next, after taking his hands off of his ears, he went inside the bank and sat at the tellers desk. He even turned the handle on the safe.

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He followed some kids to the supermarket, got a cart, filled it with food, and checked out at the cash register.                                                  IMG_1812

He also spent time at the pretend cafe, cooking food in the microwave and filling a customer’s glass with a pitcher. But his favorite part was the pretend airport, maybe because his daddy travels on airplanes a lot. He kept running through the scan to make it beep and playing on the pretend airplane.

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About an hour into his play, they announced a dance party on the stage. They started playing loud music as the children danced to the rhythm. Ryan conveniently found that spot by the wall near the exit to take a time out. I never realized how loud things are until I had a son who was sensitive to it. But Ryan waited patiently until the dance party was over and then continued to play. In the past, he would have insisted on leaving.

Ryan’s ability to handle going out into the community varies from day-to-day. It depends on how familiar he is with a place. It depends on his mood and if he’s feeling more out of sorts or insecure due to changes in his life or a lack of structure. In general, Ryan’s ability to enjoy kid’s museums, malls, restaurants, is getting better. I think Ryan will always enjoy his alone time and will always be the keen observer. But for now, we’ll just keep plugging away and exposing him to everything in the outside world that we can.


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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.


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A New Year, A New Blog

IMG_0156It’s a new year. It’s time to start a new blog. But where do I begin? Do I start at the VERY beginning, when I first heard Ryan’s heart beat and the doctor told me that I was pregnant? The sound was a miracle. I had been trying to get pregnant for too long. My husband and I thought we wouldn’t have children. Do I start at the first indication that something was wrong? Ryan was not sitting up when he was supposed to. The pediatrican told us that Ryan was a “floppy” baby and sent us to a neurologist who confirmed that Ryan had low muscle tone. Or do I begin when Ryan was first diagnosed with autism at 3 years old? My husband and I were surprised, not believing, yet relieved at the same time.

There’s a lot to catch you up on. A lot has happened these past seven years. But there’s no better time than the present. So I’ll begin with now. Currently, my husband and I have a bright, curious first grader on the high functioning end of the autism spectrum whose mind never slows down. He loves school, and doesn’t wonder why he spends part of his day in a special needs class and not that whole day in his typical, mainstreamed class like the rest of the children. He doesn’t seem to notice that his brain works in a different way than his typical peers. He steps off the bus with a smile on his face, proud that he can now handle the sensory overload of the special needs bus that drops him off at the front of our house. On Mondays, he eats a snack after school, then works till 5:30 p.m. with his ABA therapist. His Tuesdays and Fridays are exactly the same as his Mondays. On Wednesdays, he has occupational therapy after school. He has ABA Therapy for three hours on the weekend. He’s the hardest working boy I know.

But he’s happy. Except when he sits in a restaurant that has music playing and a TV on at the same time, loud voices talking over beeps and clanks coming from the kitchen, and bright overhead lights. Then he’ll sit with his eyes looking down and hands on his ears, an unhappy frown on his face. Yet he’s starting to smile when we go to Wal-Mart. He loves to eat at Chic-fil-a where the lights aren’t as bright and the music is calming.

Ryan wants to be an astronaut when he grows up. He wants to know why we can’t book a flight to the moon like we book a flight to his grandparents’ houses. He’s shooting for the moon. And you know, it’s not totally unbelievable that he’ll get there some day!