Shooting for the Moon with Ryan

Life in the World of Autism


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Why I Could Hug Whoever Invented Camp for Kids on the Autism Spectrum

I have to admit, I have the same smile on my face as the other parents after I drop my son off at summer camp. A day to myself! I can get so much done at home! I can also relax a little, take a break, and know that my son is in good hands.

I want to hug the person who came up with Camp Boomerang, a YMCA day camp for kids on the autism spectrum. I want to hug the volunteers, mostly teenagers, who agree to get training and spend long hot days in the sun being a buddy for Ryan.

Without all of these people, Ryan would be at home all summer. He would never  have the opportunity to experience camps like other kids. Every day, he gets to swim and play on the playground. He gets to do yoga, art, music therapy, archery, sports, hiking, and play outdoor games. He gets to spend time with typically developing kids, and gets special attention from a buddy.

He’s really growing from this camp opportunity. At our neighborhood pool, he put his face in the water for the first time. Someone must have taught him at camp. Or, he copied what the other kids were doing. Right now, Ryan is very aware of others and is more open than ever to copy what he sees other children doing.

It’s really amazing to see Ryan wake up in the morning with a smile on his face. He seems to really love camp. I say “seems,” because he never says much about it. If I ask him if he likes camp, he says yes. He shows how he feels more with his actions, like being ready and in the car on time for camp everyday, rather than with his words.

It’s hard to find activities that Ryan can enjoy, since they need to be structured and not too over stimulating. His buddy told me that he didn’t want to jump in the bouncy house one day. So they decided to swing instead. They are flexible and they need to be. You can’t assume that fun activities most kids enjoy will be fun for kids on the spectrum, especially if they have sensory processing disorder. Ryan doesn’t like the sound of the loud fan that keeps the bouncy house inflated. He also doesn’t like the closed in feeling and the closeness of other kids bouncing around him.

For me, it’s kind of neat to see other kids like Ryan being dropped off at camp and know that he is not alone. It’s good to see other autism parents and know that I am not alone. One thing about autism parents is that we don’t get out a lot. We tend to be isolated. Our children aren’t always capable of doing well in public. We avoid many places if we can.

But here we are, dropping our kids off at summer camp for kids on the autism spectrum. We look at each other with knowing glances. We smile at the familiar behavior of the children we are ushering toward the camp meeting spot.  I see big kids holding their parent’s hand through the parking lot, even though they seem too old for that. They could bolt. They don’t always understand the danger of a parking lot. I see kids taking a long time to get out of the car. Transitioning is hard. I see the same uneven gait as my son, arms flapping, with happy faces that have a dreamy, far away look, enjoying a rich inner life.

And I hear bits of parents conversations as they try to remember to tell everything to the camp counselors. They ask lots of questions. Is he eating his lunch? Did he do o.k. in yoga today? Did he stay with the group? Did he finally participate in art class?

We all sort of hang around the parking lot an extra minute, craning our necks to see if our child is doing o.k. as the camp buddies lead their kids toward the first activity. Then I see that the smiles on those parents faces match my own as we drive away knowing all is well.

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I Never Thought I’d have to be THAT Kind of Parent

IMG_2909Ryan’s second grade year is officially over. I wish I could say it was a good year. I wish there was a teacher I was sad to say goodbye to, or that Ryan thrived and grew in more ways than I could imagine. Instead it was a disappointing and stressful year. But it was also eye-opening.

This year, I came to the conclusion that somewhere along the line most parents of special needs children are going to realize that their child’s school doesn’t always have their best interests at heart. This might happen right at the beginning of the child’s school career or later on. For us, it was later on.

Up until this year, I didn’t have much trouble getting Ryan’s needs met. I smugly counted my blessings. How did he get so lucky to have the wonderful teachers and programs that were available to him? Ryan was in a K-2 self-contained classroom, which meant his major subjects, math and reading,  were taught in a small group setting. Ryan spent the rest of the day (social studies/science, related arts, lunch, recess) with his peers. This seemed to work well, especially since Ryan had sensory issues and often needed breaks from a large noisy classroom.

The problems came when Ryan’s needs changed. Suddenly, Ryan could handle the general education classroom and was actually learning along with his peers. He still needed support in the general education classroom with following directions and with his focus, but he was successful.  Ryan’s reading ability sky rocked. He started reading on a fifth grade level. He could read almost anything.

But the teachers weren’t so enthusiastic about what Ryan could do. The teachers reminded me that the comprehension part of his reading was at the second grade level. Even so, a child reading above grade level and comprehending at grade level probably needed more challenges. They also made the case that third grade was going to be an extremely challenging year. Just because he could succeed in second grade didn’t mean that he would succeed in third grade.

Ryan also started to get the hang of taking tests. He was studying for science/social studies tests at home. He was taking the tests and passing, and even got some A’s and B’s. It also became apparent that Ryan continued to lag behind on social skills and needed more interaction with his typical peers. He had no friends. When children tried to interact with Ryan, he ignored them until they went away. In conclusion, it seemed that Ryan was ready for more general education time. He needed to spend more time with his peers for social and academic reasons.

But was the school ready to give Ryan more general education time? The answer was no, basically because Ryan needed assistance in the general education classroom with following directions and staying on task. His special education teacher even said to me, “Ryan is not going to get one of my assistants in the general education classroom. Those assistants need to stay in special ed.” This teacher was not willing to let one of her assistants help Ryan in general education setting, even if it was in Ryan’s best interest.

The school was telling me that if a child needed assistance, he needed to be in the self-contained classroom. If he was more independent, he could be in the general education classroom. But they were not going to give Ryan one on one assistance in general education, even with the idea that the assistance would eventually be “faded out.”

We just assumed that Ryan would get more and more general education time as the years went on. We assumed that he’d get help from an assistant who would slowly step back as Ryan became more independent. We wanted to believe that the school district was progressive in their thinking about special education, and not stuck in the 1950’s. After all, children need to be educated in the least restrictive environment or they are breaking the law. The problem is, IDEA is worded vaguely so that a school district can interpret the meaning of the least restrictive environment to match their own outdated philosophy.

Isn’t it just natural for parents to want their children to be educated with their peers? Why should special needs children miss out on doing what the other kids are doing? Why should they be put in a room down the hall away from everyone else? It’s easier to have 4 or 5 students to an assistant than 1 student to an assistant. It’s also more cost efficient. But nobody wants to admit that a lot of decisions are based on money.

Children with special needs are so varied in the way they learn. Every child is different and needs different things in order to succeed. One size does not fit all. A program that works for one child will not work for another child. Schools need to work with parents, who usually know their child best. Instead of rolling their eyes (And believe me, I experienced this unprofessional behavior at an I.E.P. meeting!), the schools should be listening carefully.

Unfortunately, most school districts have separate special education and general education departments. They are even funded separately. Although the principal participates in I.E.P. meetings, he usually doesn’t have much interest or say in what goes on with the special education students beyond being a friendly and inviting administrator. After all, special needs students are often exempted from the yearly school wide testing. Their scores aren’t part of the scores that are published each year. If your child is in a school district whose identity is based on their superior test scores, your child’s education isn’t really a priority if they aren’t going to help elevate the scores.

In fact, some schools might actually believe that your child could harm the scores. My personal theory is that schools fear having special education students in the general education classrooms because they could distract the teacher and other students from their main mission: teaching to the test. No one should be in the classroom that could cause the teacher or students to direct any of their energy elsewhere. And what grade does testing begin to be extremely important? Third grade! The grade that Ryan isn’t supposed to succeed in because of how difficult it’s supposed to get.

Despite the fact that Ryan got an A one semester in second grade general education social studies (the subject matter or tests were not changed, Ryan just had an assistant with him), the school wanted to put Ryan in special education social studies and science in third grade. So we called an I.E.P. meeting and got an advocate to come with us. We got Ryan his social studies and science classes in the general education class next year, but we really had to push for it. The meeting was horrifying in many ways.

I know now that getting Ryan time in general education is going to continue to be a fight.We will continue to call more I.E.P. meetings and work with more advocates. Every year will be a push for what we believe will be best for our son.

I never thought I’d have to fight for anything. Being a former elementary school teacher, I never thought I’d have to be THAT kind of parent. In fact, I was determined not to be THAT kind of parent. But children with special needs come into this world already facing obstacles and challenges that most typically developing children never have to face. These children shouldn’t also have to face obstacles to their learning.

 

 


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Dropping My Scrooge Attitude to Embrace Change

IMG_2419I started Christmas break with a Scrooge attitude. It was time for Ryan to be off from school for two weeks and I knew he was unable to handle less structure and the change in routine. I prepared myself for the inevitable potty accidents, meltdowns, regressions, and Ryan’s overall unhappiness with staying home from school. I count my blessings every day that Ryan loves school. And every year at Christmas time, I think about how nice it would be for Ryan to go to a year round school that had no breaks, if a school like that existed.

It’s not that I don’t want to spend time with my son. I just hate to see him struggling, unhappy, and unable to participate in certain holiday activities that are overwhelming to him. I wish that all the holiday traditions made sense to him and that he could enjoy all the decorations and exciting changes that surround him.

So I wrote out a schedule for Ryan each day of the break. I found that a schedule is one way to add structure and stability to Ryan’s days. There was a time for everything, including getting dressed, eating meals, and other activities. We crossed off each item as we went along.

As a family, Ryan, his dad and I went on hikes, took a trip to the zoo.

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We even stayed over night at a hotel on New Years Eve to get away from the loud fireworks. Fireworks are legal in our state. I knew each outing would be a struggle due to Ryan’s anxiety and sensory issues. He gets overstimulated in many environments away from home.

But we were determined to keep Ryan busy. And the only way we knew to help Ryan over being uncomfortable with being away from home was through gradual exposure. Some people call it exposure therapy.

It didn’t take long for my scrooge attitude to start fading away as I began to notice something had changed this winter break. Ryan seemed happier and more at ease. He actually enjoyed the hotel and jumped right into the indoor swimming pool.

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He smiled as he ate a slice of pizza at an over stimulating restaurant. He opened all of his presents on Christmas morning without anxiety over what unknown object could be inside.

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Could it be the very small dose of medication we were experimenting with to help Ryan’s anxiety was working? As the winter break went on, it became apparent that Ryan was more focussed, more verbal, and more able to cope. I honestly wasn’t expecting to see a dfference in Ryan. We had tried medications in the past and nothing worked. In fact, many times the side affects were worse than the problem we were trying to treat. Trying a new medication is always hard. My husband and I don’t want to give our child any type of medication unless it is absolutely necessary, ever. We almost gave up on it.

But we got to the point where we were concerned with Ryan missing out on life. He had just turned 8 in December, was high functioning on the autism scale, yet he couldn’t go to movies, restaurants, birthday parties, stores or many other places due to his anxiety. Basically, exposure therapy was not working. We could expose him to all of these places many times, but he wasn’t happy away from home and he wasn’t improving.

So we started Ryan on a small dose of a new medication for his anxiety and followed the advice of Bill Nason, author of “The Autism Discussion Page on Anxiety, Behavior, School, and Parenting Strategies.” You will also find him on Facebook. He wrote, “Only stay with a medication if it is having a ‘wow’ effect. . . If the medication is truly therapeutic, you will see significant improvement in your child’s mood, attention, or behavior. If you only see small changes, it is not worth putting chemicals into the child. If the medication is truly treating a biochemical imbalance in the child, you will see significant changes.”

As we continue through the New Year, the changes have been significant. My husband and I often look at each other and say to each other, “Who is this alien child who just came out of his room, is looking us in the eyes, and connecting with us by inviting us into his world?” Ryan is growing and changing with each day. It wasn’t too far into the Christmas break that I dropped my scrooge attitude and embraced the chance to spend quality time with my son.

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Nothing is perfect. And there is no such thing as a magic pill. Ryan’s behaviors still improve, then get worse again. He still has anxiety. But I notice that the medication is taking enough edge off of the anxiety so he can learn to cope. Our whole family is enjoying this pleasant and unexpected changes that will bring us many new surprises in 2016.

 


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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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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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Fireworks, Loud Booms, and No Sleep

IMG_1847Yesterday was the first day in a month that we did not hear fireworks at our house. I think the Fourth of July fireworks season is finally over. We survived another year, and that’s really saying something when you have a sound sensitive child on the spectrum.

Last year, on the Fourth of July, we thought we were very clever by booking a hotel room in a neighboring state where fireworks are illegal. We knew that the explosions in our neighborhood would be so loud and go on for so long that none of us would get any sleep. Ryan fell asleep easily at the hotel, and by the time we heard some distant booms from displays that were far away, Ryan was sound asleep and didn’t hear them.

But this year, Ryan became hyper vigilant to firework sounds. If he heard a boom while in bed, even if it was far away, he would get up, turn on the light, and refuse to go back to sleep. Usually, this would happen the minute I said good night, turned off the light and shut his bedroom door. “I don’t want to go to sleep,” he’d say. “I’m afraid they’re going to wake me up.” His little body would tense up. His eyes would be wide open. He couldn’t try to relax until there were no more booms to be heard, usually some time around 11:30 or midnight.

Some nights, I just couldn’t imagine who felt the need to set off these fireworks so late on a weeknight. I was exhausted, and so was my child who needed to get up early the next morning for camp. One time I approached my neighbor and politely asked if the fireworks display could end early. She looked incredulous that I would even ask such and question and said she has a two year old who is o.k. with loud booms and goes to bed at midnight. Why can’t my seven year old do the same?

Well, this year at the hotel it didn’t go quite as well. We decided to spend two nights in the hotel. The only problem is, the residential neighborhood behind the hotel decided to have their own fireworks display both nights and the loud booms went on past 11. We couldn’t believe our luck. Was there no place to go to get away from the noise?

So we are all exhausted right now. I feel like I’m up against a brick wall when it comes to fireworks. Somehow, they are very important to a lot of people and their attitude is everyone else needs to tolerate the noise. I was told by a neighbor that she has a special needs son and the he learned to tolerate fireworks. Maybe my son should, too.

My only plea is for people to remember that as fun as fireworks are, they are upsetting to many people. They not only upset some children with special needs, but also veterans with post traumatic stress disorder and pets. While we expect to hear fireworks on the fourth of July, people need to be considerate on other days. Don’t set off fireworks past 10 p.m., especially on week nights. Also, set all of you fireworks off one after another and get your display over with. Don’t set off two or three, then wait 25 minutes and set off another. That 25 minutes is enough time for me to think the fireworks are over, get my child back to bed, only to wake him back up with another unexpected “boom!”

We’re already trying to figure out where to go next year on the Fourth of July. Any suggestions? We’re not sure a fireworks free zone exists!

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