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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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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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.