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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It Only Takes a Minute

IMG_2645I decide to check on Ryan. It is after school and Ryan has been playing in our fenced in backyard for the past 10 minutes. I usually peek out of the window every so often to make sure he’s o.k.. I scan the backyard. He’s no where in sight. He’s probably hiding behind the shed. I walk out the door and onto the deck. I look toward the shed and he’s not there either. Then I see the gate to the fence is open. The gate is NEVER open. It’s ALWAYS locked. I begin to run. I run through my next door neighbor’s backyard, then my next neighbor’s yard. I run down the hill and up the street. He’s not anywhere I look.

This is the second time Ryan has bolted. The first time was before Christmas at school. He was on the swing at recess, and suddenly decided to run off the playground. He’s fast. His teacher started chasing him. The other teacher called for help on the walkie-talkie. Before long, the principal, assistant principal, and another teacher were outside searching the area around the school. They finally found him hiding behind a bus in the bus lot. I don’t know how long he was gone. I really don’t want to know. I don’t want to think about the busy street in front of the school or the deep woods behind the school. Ryan has no sense of fear. He doesn’t understand that cars won’t stop for him if he runs into the street. He doesn’t understand that he could get lost or not be able to find his way back.

Ryan ended up in the principal’s office, which made no difference to him. He doesn’t understand the stigma of going to the principal’s office. In fact, he thinks going to the principal’s office is fun. I give the principal and his teacher credit for trying to make him understand how dangerous it was for him to run from the playground. I don’t think it sunk in.

Ryan now has recess on the kindergarten playground since it is totally fenced in. The school can’t completely fence in the second grade playground because it would be too expensive. But that’s a whole other story.

Today, as I look for Ryan, a million things go through my mind at once. He could be anywhere, in anyone’s yard, behind any tree, in the middle of the woods, in the middle of a busy street. I know that time is ticking. I try to figure out the best way to find him. I’m out of breath and realize running from house to house is not the most efficient use of my energy. Should I call 911? Should I get in my car? Should I call my neighbors? Then I see the boy from next door walking down the street. The middle school bus just dropped him off. I ask him if he saw Ryan. He did, way at the top of the hill, almost a half mile away, standing behind a car parked in the street.

I run into the house for my keys. It seems like it takes forever to dig through my purse to find them. I sprint to the car, back out of the garage, and head down the street. Then up ahead I see Ryan running toward my car. Behind him are two girls and their dad. The girls also just got off the bus. They saw Ryan, recognized him from church, and started following him. Thank God they decided to follow him. I stop the car and run over to Ryan. I’d give him a big hug but he always pulls away. I grab onto his hand instead. I hurriedly explain the situation to my neighbor, how Ryan has the tendency to bolt,  and that we have safeguards at our house. The gate in the backyard is always locked. It was open today.

Another woman pushing a child in a stroller joins the group. She reports that Ryan had gone into someone’s mailbox, pulled out the mail, and threw it on the ground. Yes, Ryan is obsessed with mail trucks and mail right now. She says that she saw him run the whole way down the other street. Her voice sounds critical. And why shouldn’t she be? Wasn’t I just as critical of the mother of the boy in California who ran out of the house in the dead of winter with no coat or shoes? And the ending was not a happy one. Didn’t I criticize her to myself and wonder how any mother could not watch her child better than that?

It only takes a minute when a child has a tendency to bolt. We have our garage door button covered up so Ryan can’t open the garage door. We have extra locks on our doors. The fence gates are always shut and he can’t open them. Or are they? It only takes a minute. . ..

I put Ryan in the car and drive him back home thinking all the way that he’s older and bigger now. He has a mind of his own. And he’s smart. If he wants to run, he’ll find a way. I tell him that he’s not allowed to leave the house or backyard without Mommy or Daddy. I ask him if he understands and he says yes. But he still doesn’t seem to get the enormity of what he did or how much danger he was in. Again, I thank God that nothing bad happened, and realize that each passing day will continue to bring new and challenges and that we’ll always have to stay one step ahead.

 

 

 


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Getting What Holidays are All About

DSC04254There was a time when holidays had no meaning for Ryan. He didn’t understand the concept of trick-or-treating, and he was finished after ringing three door bells. He had no idea we were celebrating Thanksgiving and certainly wasn’t going to eat the turkey since it wasn’t one of his three preferred foods. Ryan wasn’t aware when it was the Christmas season, wasn’t interested in opening presents, and found all the lights and music over-stimulating.

But as time went by, Ryan finally started to get what holidays were all about. Last Halloween, Ryan couldn’t get enough of ringing door bells and looking inside of other people’s houses. He would have run in if had they let him. When he got home, I let him eat six pieces of candy. I was thrilled that Ryan actually wanted to eat candy, which doesn’t seem to make sense until you live with a child whose food choices are extremely limited.

This year, at age seven, Ryan finally gave me an answer when I asked him what he wanted to be for Halloween. For the first time, he cared about what he was going to be. When he made the request to be WALL-E, I was beside myself with excitement. I actually got to make him a costume instead of searching for any costume he could tolerate sensory wise.

I learned my lesson when Ryan was two years old. I found the most adorable lion costume at a consignment sale. It had a furry coat with an attached hood and mane. It even had furry pants and paws that fit over his shoes. Ryan could barely look at the costume, let along put his arm in the sleeve. I quickly turned him into a farmer instead, with a bandanna and denim overalls.

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I sold the lion costume back to the consignment sale the next year.

The first year that Ryan decided to eat turkey was exciting for the whole family.

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He had been doing feeding therapy for at least six months and his food choices were no longer limited to yogurt, hot dogs and grapes. Ryan also found out that he loved parades, even though they were loud and crowded. The drums in the marching bands were thrilling. The giant balloons, floats, and performers were all amazing to him.

As a preschooler, Ryan had no interest in presents or opening them. He had no idea what he wanted for Christmas at all. In fact, Christmas was just another day to him. He didn’t get the concept of celebrating a holiday. Yes, we saved money on Christmas presents when Ryan was little. But we all missed out on the Christmas morning magic.

Then, when Ryan was five, he surprised us by saying out of the blue “I want a train that goes around the bottom of the tree.” It was Christmas Eve and the first time Ryan ever requested anything for Christmas. I was overjoyed, and determined to get him what he requested. I ran to Wal-Mart to grab any type of train that was available. At the last minute, I was only able to find a small plastic battery operated train that fit on his wooden “Thomas” tracks. It was enough to fill Ryan with delight on Christmas morning.DSC07961

This year, Ryan is already asking about the real Santa vs. one of Santa’s helpers. Every time he sees a Santa Claus, he wants to know if he’s the real thing, because the Santa he saw at the store looks different from the Santa at the party. Ryan has only believed in Santa for a very short time. Is he already questioning it?

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Ryan has come a long way from not knowing the difference between a holiday and a regular day to participating in many of the holiday traditions. So what new tradition will finally have meaning for Ryan this Thanksgiving and Christmas season?  The greatest joy of celebrating a holiday with Ryan is watching him latch onto an aspect of the holiday that he previously didn’t get, which always makes the season even merrier and brighter!

 


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Navigating Through the I.E.P. Process Can be Intimidating and Confusing

IMG_2182Ryan’s I.E.P. (Individual Education Plan) meeting was yesterday. We sat at a long rectangular table in the conference room of the school with the school psychologist, the speech teacher, the occupational therapist, the general education teacher and the special education teacher. I always feel a little intimidated at these meetings. But usually I’m glad if the meeting goes quickly, if I’m feeling impressed with how Ryan is meeting his goals, or if we’re all in agreement about the coming year.

But this year is different. Trying to navigate through all the options and what’s best for Ryan is hard. We want him to spend more time in the general education classroom. But is Ryan ready?Especially troubling is the number of prompts Ryan needs to complete his work and follow the teachers directions. He understands everything he’s supposed to do, but won’t do it without extra prompting.

Ryan is lost when presented with whole group instruction. Somehow, in his mind, the whole group doesn’t include him. When the teacher says “Class, turn to page 20,” it doesn’t register to Ryan that he is also a part of the class and needs to follow the directions.

And he hates anything that requires a lot of writing. Ryan’s writing is large and sometimes hard to read. Math isn’t Ryan’s favorite subject since it’s abstract. But he’d do better if the new common core math didn’t require him to write out all the numbers in expanded form, draw hundreds, tens and ones blocks, and make grids and columns.

Ryan often lacks motivation to complete work or tests if it’s not interesting to him, which is common among children with autism. Wanting to do well on a test to please others is a highly social concept. Ryan doesn’t care what others think. So it’s hard to assess what he knows. Until the day he blows everyone out of the water with a connection he made to a story he read two weeks ago, or he actually felt like taking a test that day and got a good grade.

Ryan has some strong academic skills. He reads on the fifth grade level and remembers every fact that he hears. You can’t remember the name of a store or the title of a book? He’ll tell you. He learns quickly when he’s interested and is paying attention.

So where do we go from here? Do we hope maturity will eventually set in and he’ll suddenly understand what he needs to do to succeed in a general education classroom. Does he need more one on one or less one on one? Has he become dependent on extra help or is it something he needs?

The next step is for Ryan to do a five week trial with a math class and a reading group in the general education classroom. In the mean time, the school psychologist will be giving Ryan the VB-MAPP test (Verbal Behavior Milestones Assessment and Placement Program) for children with autism. The five components of the test should be able to show us where he stands with his language and verbal skills, if he has acquired the skills necessary to learn in a less restrictive environment, and what goals need to be placed on his I.E.P. so he can be ready for inclusion.

I’m hoping when all the assessing is done, the school and I will be in agreement about what is the next step for Ryan. But what if we disagree? Who will win in the end? If this post sounds confusing, it’s because the whole I.E.P. process is. It’s a stressful and difficult time for parents who want what’s best for their child. If only we had a crystal ball and could look into the future and see what is the best path to take. The worst feeling is regret over not going in a certain direction. So we just keep moving on, gathering more information, waiting and watching, and hoping that it all becomes clear in the end.


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September Was One of Those Months

IMG_2151September was one of those months I was glad to see go! It was filled with questions, uncertainty, and set backs. This school year we’re trying to figure out what the best education model is for Ryan. Being in a special education class and going into regular education for related arts and other non-academic programs during the day no longer seems to be the least restrictive environment for him. Yet, how will he accomplish more of the regular education academics and how will he do with changing the routine? Are we pushing him too hard? How can we make his academic journey challenging without causing too much anxiety?

Then, on Labor Day, Ryan broke his arm when he fell off his swing in the backyard. More set backs in sleep, eating and mood. Our experience at the pediatrics emergency room at the local Children’s Hospital was exceptional. It was worth the 30 minute drive. I would encourage all parents of children on the spectrum to plan ahead where they would take their child in case of an emergency. Ryan was assigned a child advocate and got to watch Toy Story on the tv while they x-rayed his arm and put him in a cast. His experience was far from traumatic. Going home with a heavy cast on his arm was a different story. It was difficult helping Ryan when he couldn’t communicate clearly what he wanted and needed.

Last week, Ryan got his cast off and I’m seeing glimpses of a happy, smiling Ryan again. He can go back to swinging on the playground at school (I’m still nervous about him using our swing at home.), which had a calming effect on him during the school day. He can sleep better. He can get dressed better. He can run around again, dribble his basketball, play tag, play chase and tickles, and play catch again.

In one week, is Ryan’s IEP meeting where we will discuss how we think he will learn best during second grade. We just keep moving forward, and sometimes backwards, as we make our way through this hectic journey into 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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Summer is Definitely Hard

IMG_1788Summer is definitely hard, even though Ryan gets more pool time and play time. He usually regresses, and this year it’s in speech. He’s being a very quiet little boy. It’s hard to get a yes or no out of him. I know it’s just the summer time blues, a change in routine, anxiety about not knowing everything that’s coming up next. But it’s still difficult to watch.

Today, I looked back in my journal. I tend to write the old-fashioned way with pen and paper, then retype my journal entries into my blog. As I browsed some of my writing, I came across a journal entry I wrote in the spring that I never typed into the blog. Interestingly enough, it was about Ryan’s speech and a break through he was having. Below is the journal entry, dated March 12, 2015:

A few weeks ago, out of the blue, Ryan said to me “Principal Young got duck taped to the wall. It was so funny!” (Principal Young chose this stunt as a reward for the school raising money for a local charity.) That was the first of a series of small stories that Ryan started telling me about school. Ryan never talks about school unprompted. And if we do prompt him, he usually tells us that he had a good day in school, but no specific information.

I was floored when he gave me this information about the principal. I immediately e-mailed his teacher. She said that he was also telling her small stories about home. For example, he went strawberry picking, grandmom and granddad visited, he ate chili for dinner.

I used to mourn the fact that Ryan didn’t speak until he was three. When all my mommy friends were bragging that their child was saying big words and had an amazing vocabulary, I just wanted Ryan to say Mommy. I hated missing out on the joys of watching my child learn to speak. Then one day, close to Christmas break, Ryan had a break through in his three-year old special needs preschool class. His teacher put a microphone in front of him, and asked, “What does Santa say?” Ryan said “Ho! Ho! Ho!” The teacher found what motivated him to talk. A microphone. This was one of the first time Ryan spoke in class.

I was so proud of Ryan’s “Ho, ho, ho!” that I had to tell grandparents and friends right away. That is when I realized that I wasn’t missing out on the joy. I was experiencing the same joy and pride as the parent of the typical child, but just a little later. In fact, the pride and joy was probably even greater because I had been waiting for it for so long.

So now, I’m joyfully collecting all the little stories about school and writing them down as soon as I get them. They’re too great to forget. He said, “Trent wanted me to throw my applesauce at lunch, but I didn’t want to.”

“I looked at a really good book at school. It was Arthur’s Teacher Moves In.

“I read a poem about the moon.”

“Mrs. Perkins had two kids missing today.”

“I dropped my library books on the floor.”

“I didn’t check any books out because I ran out of time.” 

“We didn’t have PE because of a schedule change.”

After reading this journal entry, I realized Ryan is always going to struggle with his speech. He’s going to continue to take a step ahead and then two steps back. But I’ve learned that each step back never completely goes as far back as it was before. There is always progress being made.  It won’t be long before he takes two steps ahead again. I’ll probably be writing down little stories again in no time.