Shooting for the Moon with Ryan

Life in the World of Autism


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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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Experiencing Your Child’s Unexpected Growth is a Unique Gift for all Special Needs Parents Everywhere

IMG_1752Everywhere I go, I hear children saying how excited they are that school is almost over for the summer. But that’s not the case for Ryan. He would go to school year round with no breaks if he could. This is the hardest time of the year for Ryan. Transitioning to the summer is hard. Losing what is familiar is hard. And losing the structure of an established routine is hard.

So all of his anxiety comes out with trouble sleeping. Ryan is the type of boy who never naps or just falls asleep in the car or on the sofa. It has been this way his whole life. The only time that happens is if he is sick. Otherwise, he needs to go through a structured bed time routine to fall asleep. And heaven forbid if my sound sensitive boy hears a dog barking, thunder, a lawn mower, or fireworks while trying to fall asleep. So he takes melatonin, a natural sleep supplement, to help him get to sleep, and guanfacine to help him stay asleep the whole night. But they don’t always work.

Sleep issues! They are so common in children on the spectrum. And they are one of the most difficult problems to deal with. If a child isn’t getting enough sleep, his parents are getting sleep either. Then everyone is walking around tired and grumpy. So sleep problems come back full force when Ryan is experiencing big changes in his life. But it will get better.

Right now, I’m grateful for all of the wonderful people in Ryan’s life, especially his teachers and therapists at school who have helped him learn and grow this year. Ryan loves school. That says a lot for the kind of nurturing he is getting there.

When Ryan started kindergarten two years ago, he didn’t talk at school, even though he was able. They’d give him the teacher’s walkie-talkie to encourage him to say something. When he finally did says something (He said “When will it stop?” about the alarm during a fire drill.) the whole class clapped. He started first grade talking up a storm. He began being more social with his peers and teachers. By the end of the year, he was asking for people’s names and talking about his likes, dislikes, wants and needs. He was playing with other kids on the playground. For the first time in his life, he had an answer if someone asked him who his best friend was.

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So, the end of the school year is an emotional time, as we think about what the school year brought and what new things will be ahead. And although it’s an emotional time for the parents of typically developing children, there’s nothing like the emotion and joy that comes with seeing the growth of a special needs child when you weren’t even sure if you’d see a lot of growth in the first place. That elevated joy is what makes parenting a special needs child a unique gift and special privilege, and one reason why I wouldn’t change my life for the world.


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Substituting in a Special Needs Class is Rewarding

IMG_0668Now that Ryan is in school for a full day, I can do some substitute teaching. Before Ryan was born, I was a second grade teacher for many years. I was starting to miss the classroom, so I signed up to be a substitute. It works well for me, because I can be home when Ryan gets home and still get him to his therapies on time after school.

Yesterday, I got a call for a substitute job for an instructional assistant. The call didn’t say what grade, which is unusual. But I assumed it was kindergarten, since it’s the only grade that I know of that has assistants. When I got to the office, the secretary gave me the badge and key to the classroom. I asked her if I would be working with kindergarten. But she didn’t answer. She just said, “You’re in room 115.”

I still didn’t know what grade I had been assigned to. When I got to the classroom, the teacher was standing at the door, and I said that I assumed I was working with kindergarten. She said, “No, this is a K-2 cross categorical special needs class.” (What a coincidence! This was the same type of special needs class my son is in, except he attends a different school.)

Immediately, I was confused about all the secrecy. But the teacher informed me that if they are open about what type of class it is, most substitutes will not take the job. In fact, many will walk out of the office as soon as they find out they signed up for a special needs class.

The mother in me instantly felt defensive. These substitutes are educated people, I thought. They should be familiar with special needs. Everyone has come in contact with a special needs person at some point in their lives. Do they think they will catch something? What is their problem?

Maybe they’re picturing a violent out of control child. But special needs does not automatically mean behavior problem. And behavior problems are epidemic in the typical classroom. I’m sure most substitutes with any amount of experience had their share of behavior problems while teaching.

But after I cooled down, I realized that many people probably don’t understand special needs kids. They’re afraid they need special training or have to acquire special knowledge in order to work with a special needs child. When in truth, all they need is love.

In many ways, special needs children are no different from typical children. They want attention. They want to learn and sometimes don’t want to learn. They love recess and don’t like doing a lot of work. What’s different, is that they need extra help in order to get through the school day. They learn differently, so they need specialized instruction.

I had a very memorable and rewarding day substituting in the special needs class. I watched the students participate in library and art. One of my students did a better job painting his project than the other typical children at the table. I taught math one on one. I monitored independent work time. I played a game with a student who earned it as a reward. I took the students to lunch. I came away with the knowledge that I probably just spent a day with the hardest working kids in the whole school.

Life isn’t easy for any of these children. Their days are filled with special challenges, difficult demands. and always striving to keep up with the other typically developing students around them. All students deserve a competent, enthusiastic substitute when their regular teacher is away. All substitutes should consider working in a special needs class at least once. I think they will find the rewards amazing.