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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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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Ratatouille is His Latest Obsession

IMG_1594Ryan’s greatest movie obsession is the Disney movie “Ratatouille.” For a while, it was “Toy Story.” Then it was “The Polar Express.” Originially, it was “Cars.”

Ryan loves the cooking scenes in “Ratatouille.” He loves all of the little details of the kitchen. He notices things most people don’t even see, like a sign on the wall in the background.

The other day, Ryan said, “Mommy, when are you going to make ratatouille?” I was thrilled. First, it was great to hear Ryan call my name and speak to me directly. And second of all, it was wonderful that he was asking for something. Ryan doesn’t always make us aware of his wants and needs. So when he asks for something, I’m just ecstatic. And what mother can refuse a child who is asking for a dish that has lots of veggies in it?

Ryan isn’t a big veggie eater. It wasn’t that long ago when Ryan was on a food jag and would only eat a handful of foods that included hotdogs, strawberry yogurt, and grapes. So I wasn’t sure Ryan would eat the ratatouille. I found a recipe and read it to Ryan so he would know what was going to be in it. To my surprise, Ryan told me it wasn’t the right recipe. He said that the ratatouille in the movie was baked in the oven, not cooked in a frying pan.

So I did some research on the internet and found a recipe called Disney’s Ratatouille. This is what Ryan wanted. The veggies were baked in the oven. I made the recipe recently for dinner. Ryan was excited. He ate three giant helpings of the zucchini, green pepper, onion, and tomato sauce dish. Then he wiped up the sauce on his plate with a piece of bread, just like Ego, the restaurant critic, did in the movie. The next day, Ryan asked for leftovers for lunch.

Ryan doesn’t ask for much. I rememeber the first year that Ryan asked for something for Christmas. He just turned five and wanted a train that went around the bottom of the tree. How exciting to get him a gift that he actually asked for. And it must be exciting for Ryan to finally figure out how to ask for what he wants. It’s enjoyable to watch Ryan’s frustration slowly disappear.


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The Best Kept Secret for Surviving the Summer When Your Child has Autism

IMG_1769The long lazy days of summer. No structure. Nothing to do. No deadlines. Just freedom! Sounds like bliss? Not when you have a child on the autism spectrum. I have found that the worst thing I can do is have a long wide open day planned for Ryan. That’s why I developed a summer schedule. I know! Sometimes the last thing I want to do in the morning is try to come up with a schedule for the day. But I’ll let you in on little secret. When I do, it makes all the difference in the world for Ryan and me. In fact, for our entire family.

Ryan often doesn’t know what to do with his free time. He can’t be put into a room full and toys and be told to play with them, since he often doesn’t know how to play with his toys. Instead, he makes up his own activities, like drawing a map of the neighborhood on the wall with pen, putting huge gobs of my hand lotion all over his face and in his hair, or seeing what he can flush down the toilet. He also ends up having melt downs over insignificant things like losing something or hearing a car honk its horn, because he’s feeling anxious and out of control in his unstructured day..

So I came up with a summer schedule. It does not have to be fancy or large. It just needs to be easy to read and your child needs to be able to check off the activities as you go. Ryan can read, so I write his schedule. When he couldn’t read, I printed pictures from the clip art on Microsoft Word. You can also find a lot of pictures on-line if you google “picture schedule.” Sometimes I type his schedule on the computer and print it out. I also hand write it when I’m in a hurry.

Now comes the fun part. I place the schedule in a sheet protector. That way i can use the schedule over and over again. Ryan can cross off each completed activity with a dry erase marker. I like to buy the three markers for a dollar at the Dollar Tree that have little erasers attached to the cap. I can also add more details to the schedule with the marker like the date or a specific activity, then erase them and update it the next day.

Now Ryan wakes up in the morning and asks for his schedule. He likes to cross off his activities as he eats breakfast and gets dressed. This is also a good way to get Ryan to do some summer homework. Ryan usually resists doing homework, especially in the summer. But somehow, when it is written on the schedule, it becomes official.

IMG_1763 Something clicks in his brain that he sees the activity printed in front of him, therefore he knows he has to do it. He will sit down and complete his homework, almost like magic. Also, the melt downs soon stop, since he has other things to occupy his time and he feels less anxious because he knows what’s coming next.

IMG_1767It’s a win win solution, and a little secret that I’m glad to share with everyone. What summer survival skills do you use?