Tag Archives: Social Issues

Ninth Grade: A Review

I had this great idea many years ago. At the end of every school year, I would write a review of how that year was for my two sons, a separate entry for each, describing not only their progress but also their personality, their likes and dislikes, and things they said or did. As a writer, I figured that was the least I could do.

So, that idea lasted about two years. Life sort of got in the way, along with other writing endeavors. I had always meant to pick it back up again but never did. Then I started blogging, mostly about my children’s development, and I feel better about all those years that I didn’t write about the kids (although most of those years were documented in IEP paperwork). Their development is described in detail in over four hundred blog posts. I no longer feel like I should write about them individually once a year, because I write about them all year long.

But this year was a milestone year with Nigel starting high school and making some incredible social gains, and now that we’ve reached the end of the first year, I thought I’d recap the highlights:

September: Nigel advocated for himself for the first time at an IEP meeting and learned to safely and responsibly ride his bike to and from school independently.

October: Nigel turned 15 and wrote a guest post. Also, he and I had a difficult discussion about not learning to drive yet, he successfully used his cell phone for the first time when he had a problem with his bike, and he revealed that, after many years of self-loathing, he is learning to accept his autism.

November: Nigel, for the first time ever, joined a sports team, and my heart soared at his achievement. In other news, he prepared and drank a pizza smoothie.

December: Nigel’s language skills took a step back (or sideways) with some lengthy delayed echolalia, and then dramatically forward with the most amazing conversation I’ve ever had with him.

January: Nigel (with Aidan) took his first solo flight! A mere week later, I overheard his first unprompted thank you! However, the month ended on a sad note due to his needing to quit the wrestling team for unfair reasons, but he handled it with the utmost maturity.

February: Nigel attended his first high school dance, but he still exhibited some heartbreaking social vulnerability.

March: Nigel and I watched the movie Adam together and had a great discussion about it, and Nigel found his niche in his theater class, where he made some truly wonderful new friends. I got to meet some of them when Nigel attended his first play and I accompanied him, where I witnessed a beautiful spontaneous hug.

April: Nigel started shaving! And I experienced the wonderful novelty of enjoying myself in a restaurant with my sons and having a stranger compliment me on their behavior for the first time ever.

May: Nigel went off of his medication and has been doing an amazing job overall of self-regulating difficult emotions and managing his behavior. He also achieved the rank of Star Scout after six years of Scouting.

June: Nigel had a major seizure, his first. Then he had to say goodbye to extended family members and his long-time Scout friends before moving to Los Angeles to be with his dad.

As you can probably gather, Nigel’s growth this year has been tremendous. When I look back to his earlier years, still not functionally verbal at age five with extreme sensory and behavioral issues, I can’t believe all that he has accomplished. This year alone blows me away. It’s been a lot of work, with a great deal of assistance in various forms, but he has continued to learn and to succeed on his own terms, as I knew he would. I know there will be future struggles; he still requires constant assistance academically and will continue to need help with social issues. But we’ll take it on. My son gives me so much hope that I can’t wait to see what the next school year will bring. I know it won’t be easy (none of it has been), but ultimately, it will be good.

Nigel, age 11, being a tiki at Pu’uhonua National Historical Park, Hawaii, 2006

An Open Letter to My Son’s School Administrators

After a fifteen-month hiatus while homeschooling, Nigel started back part-time at the local public school this week. How has it gone for him? Today was Day 3, and I had to write the following email, which was sent to the school’s special education coordinator, the district’s special education director, the regional autism consultant, and his social skills class facilitator:

Everyone,

I wanted to bring a concern of mine to your attention. Today when I picked Nigel up after lunch, he came out to the car twirling around in the parking lot with a sheepish look on his face. Apparently a group of girls had been hanging around him at lunch, and they told him that another boy had “stolen” someone’s cookie, and that he – Nigel – needed to “do something about it,” even though Nigel had nothing to do with the situation (which I think was contrived). So Nigel said that he chased the boy around to impress the girls, because they encouraged him to. This is just the sort of social problem that causes concerns. Nigel is usually fine in class where it’s structured and supervised, but these problems come up at lunch. The kids are not overtly being mean, but they take advantage of both Nigel’s trusting nature and his yearning to be accepted, and they get him to do things that either make a fool out of him or get him in trouble. After Nigel had chased the kid around, one of the girls linked arms with Nigel and walked somewhere and kissed him, in front of others. These kids are having fun at Nigel’s expense, even though he doesn’t realize it because of his autism.

So I talked with him about a) not chasing anyone around for any reason, and b) not doing things kids tell him to do when he’s at lunch. If this continues, not only will he wind up getting in trouble, when it was not his idea in the first place, but it’s continuing a vicious cycle of using him for entertainment – he told me that the girls actually told him that he was “entertaining.” I do not want my son used in this manner! This has happened before at this school, and I’m upset about it happening again. Is it possible for situations like this to be roll-played in the social skills class? Nigel needs to be able to recognize when his peers are using him for entertainment, since the school doesn’t seem to think it’s important to teach the non-autistic kids not to take advantage of those with social difficulties.

The risperidone is helping Nigel, and he is making such an effort, is so motivated to get back, and he has to deal with kids who try to make a fool of him and get him in trouble. This is why I mentioned the Circle of Friends program at the meeting last week, and why I think it’s so important to implement something like that. The school needs to foster awareness and compassion for students with social difficulties. No one would dare treat someone that way who’s in a wheelchair, so why does the administration say things like “this is a hard age” when someone who does not have a visible disability is targeted? This issue needs to be addressed. I realize that Nigel will be moving on from this school soon [because he is in 8th grade], but he has four more years in this district with the same peers, and there are others coming after him who would also benefit from a program like Circle of Friends. How can we go about setting this up?

Thank you,

Tanya Savko

The good news is that within a half an hour, the district special education director sent me a very supportive response thanking me for notifying her, telling me that she would meet with the school principal tomorrow, and, most importantly, assuring me that she is “committed to making this work for Nigel.”

It sometimes takes awhile – we were having these school issues two years ago – but the squeaky wheel eventually gets the grease.

Friends

Nigel has a friend over today, whom I’ll call Riley. Riley has been Nigel’s friend for about five years, and while Riley has several other good friends he would probably rather hang with on a Saturday, he always makes time for Nigel and accepts him, autism notwithstanding.

Nigel has always been a social person, which I think is what propelled him to step outside of himself and learn to talk. When he was about five and not functionally verbal, he would approach NT kids at the playground and try to engage them the only way he knew how: laughter. The problem was that the kids would think that he was laughing AT them, of course, which caused a slew of problems necessitating me to intervene. I think it was because of these unsuccessful experiments in the social realm that Nigel decided if he wanted to have friends, he needed to learn to talk.

One of my favorite sites for autism information is Natural Learning Concepts, which recently posted an in-depth interview with Stephen Shore that I really enjoyed reading. Here is what he says about friendship: “It is my sense that people with autism don’t want to have friends is a myth.  What seems more accurate is that those of us on the autism spectrum have a different way of making friends.”  So profound and yet so simple. I wholeheartedly agree.

Making a friend was a huge milestone for Nigel. And learning how to keep that friend has also been a milestone. It hasn’t always been easy: over the years, Nigel has had outbursts at school, including some resulting in injury to Riley, that I’m sure have caused Riley to reevaluate if it would be advantageous to continue being Nigel’s friend. But Riley does and he is. His presence and his loyalty encourage Nigel’s self-esteem more than anything else, I think. 

God bless the Rileys of the world, and bless their parents for raising them to be such patient, understanding kids. We need a few more Rileys around.