Category Archives: Friends

Just One Wish

A few weeks ago I wrote a post regarding a survey (taken by Natural Learning Concepts) that I found to be discussion-worthy. They recently posted the results of another interesting survey:

Over 5,000 people have been asked this question.  The results of the poll are:

If you could pick ONLY one of these for your child/student, what would it be?

1. A superior educational program with well trained staff – always 33%
2. A really good friend – always 37%
3. Excellent conversation skills throughout life 14%
4. Great behavior and enjoys staying focused – always 16 %

 

The results do not surprise me. I participated in this survey, and I did not have to think twice about what I answered. As important as #1, “a superior educational program with well-trained staff,” is for any special-needs child, as a parent, I chose #2, “a really good friend – always,” as what I wish for my autistic son.

Numbers 1, 3, and 4 help our children to succeed, and to feel comfortable and capable. But #2, far more than the other three items, helps our children to feel valued. To feel like they matter. And, in a roundabout way, feeling that way will help them to succeed, and to feel comfortable and capable. Having real friends boosts self-esteem like nothing else. I have seen how happy my son feels when he is accepted and appreciated for who he is, and if I had to choose one thing out of that list for him to have all of his life, that is it. A really good friend – always. We should all be so fortunate.

A Goonie Afternoon

Nigel’s Obsession of the Week, besides his impending Terminator Halloween costume, is the ‘80s movie The Goonies. He was introduced to this classic a few years ago and has loved it ever since. Being an extrovert, Nigel loves the friendship theme of the movie, and being autistic, he appreciates the befriending of the misunderstood, cognitively challenged character, Sloth. According to Urban Dictionary, “goonie” means “outcast” or “geek,” but also “good friend or homie.” Nigel considers himself a goonie.

After school today, he invited his NT friend Riley over to watch the movie with him. Nigel and Riley have been friends for six years, and I’m sure he has seen The Goonies with Nigel on several different occasions. Yet Riley comes over and hangs out, accepts the fact that Nigel talks and narrates throughout the movie, and just lets him be who he is. And of course, that is what good friends do. We all have our quirks, and some require a little more patience than others. But for a child, now a teen, to take it in his stride and recognize the needs of someone who’s different and care about him and spend time with him in spite of some pretty riotous quirks, well, simply put, I just love him.

They were in the kitchen at one point, taking a snack break, and I overheard Nigel say, “Do you think we’re like The Goonies? You know, friends in the same neighborhood having adventures?”

“Yeah, we are,” Riley said, biting into an apple.

“Because I’m a goonie, but you understand my difference.”

“Yeah, Nigel, I do.”

Sometimes, my heart just overflows.

A Great First Day

I talked to my boys last night! Of course I love to talk to them anyway when they’re in LA, because I miss them, but last night I was excited to hear about Nigel’s first day at the Village Glen Day Camp. It sounds like he had a great day! I asked him if he met any kids his age and he mentioned three boys that he had met, with their names and ages. One of them is also thirteen, which made me so happy for Nigel, since the NT kids his age are socially more mature than he is. I’m so glad that he met someone his age who is also at his developmental level, someone he can just be himself with.

Next I asked him what they did at the day camp. In his typical flat, but beautiful, voice he told me how they “played inside games because it was hot outside.” Also typical is having to drag information out of him if he is talking about anything other than an OW.

Me: What kinds of inside games?

Nigel: Charades and board games.

Me: Which board games?

Nigel: Clue and Battleship and Jenga.

I wanted to ask how he did with Charades, but I figured he wouldn’t know how to answer that. Instead, I smiled, visualizing him playing with his three new friends.

Me: Did you like your first day?

Nigel: Yes, I had a good time.

A huge thank you to Alexis and Niika for making this possible!

Nigel’s Opportunity

When I recently wrote about my sons going to visit their father in Los Angeles for several weeks, I mentioned that one of the good things about that is that they can do things in LA that they wouldn’t be able to do in southern Oregon. Tomorrow Nigel will start attending a summer day camp program that is specifically designed for high-functioning autistic (and Asperger) kids. Nigel is so excited about “meeting kids like me!” He had to do a phone interview last month with the program’s coordinator to make sure that his level of functioning would be compatible with the group, and it sounded like he did fine.

I am so grateful to my brother and sister-in-law, Alexis and Niika, who live in southern California, for researching this program and offering this time to Nigel as a gift. I appreciate their generosity and this opportunity that they have provided for Nigel. He has long been looking forward to becoming friends with kids who will “understand my differences,” as he puts it.  He is probably also hoping to meet a friend who will share his enthusiasm for planning an Oregon Trail trip or will help him to Rube-Goldberg the house! I just hope he has fun and enjoys doing what he loves so much: hanging out with his peers, feeling like he belongs.

The Social Realm

In his quest for friendship, Nigel regularly requests sleep-overs. It took a while for him to accept the fact that he could only invite friends to spend the night at our house, as opposed to inviting himself to spend the night at friends’ houses. I think he now understands the way that works, after about three dozen reminders. So last weekend, he invited two brothers from one of the Scout families we know to spend the night, and I made some mental notes as I watched Nigel’s social development in action.

He spent most of the evening in echolalic mode, which worried me. He used echolalia as a tool to be social before he was functionally verbal, but we don’t usually see much of it these days. The exception to that is when he is stressed, which sometimes happens when he’s trying to make peers think that he’s just like them. What he was doing Friday night was not what I call stage 1 echolalia, which is parroting (repeating back what is said to him). He started off with that between the ages of 3 and 6, and moved on to what I call stage 2 echolalia, which is repeating random lines from videos he has watched. Stage 3 echolalia is repeating certain lines from videos and trying to fit them within the context of the situation. Stage 4 is taking those strategically used lines from videos and customizing them by inserting correct names and other details relevant to the situation. Nigel now mixes stage 4 with his own spontaneous speech on a daily basis. But occasionally, when stressed or unsure of himself socially, he reverts to stage 3 and even stage 2.

During dinner Friday night, he was so worked up that he was quoting random lines from the live-action Scooby-Doo movie. I think he was trying to make the kids laugh, because he could hear the movie in his head and it was making him laugh, and he was trying to share that with them. But by merely spouting the lines randomly, he only caused confusion for the boys. They were polite and accepting, but they didn’t know how to respond, and I could tell they were uncomfortable. So I had to poke my head in the room and try to steer the conversation to a different topic.

I aurally checked in a few minutes later, and Nigel was doing a little better. He had moved on to stage 3, and I overheard him say a line from Jurassic Park: “In 48 hours I’ll be accepting your apologies,” when his friend accidentally bumped him. By the time dinner was over, he was back to mostly employing his own speech, which I think occurred because the boys started talking about James Bond movies, which is Nigel’s Obsession of the Week. Aidan and the two guests were discussing the story about the painted girl in Goldfinger dying because her skin couldn’t breathe, and the fact that Mythbusters disproved it. (I smirked back in the kitchen and refrained from telling them about my college days, when a friend of mine did a photography project using models painted in all one color, and I was yellow. Suffocation was not a concern at that point.)

But the good part was that Nigel had calmed down enough to interact appropriately with his peers. How he was acting earlier made me think that he was probably like that at the middle school, and there was no adult around to moderate the conversation, so things just escalated to the point where an intolerant NT kid punched him in the face or told him to run laps around the field and laughed at him. It’s easy to see how he reverts to the stages of echolalia when he is over-socialized because it’s comfort behavior. It’s something that he knows. When some random kid at school is talking to him, he doesn’t know what to expect. So he starts playing a movie in his mind and starts verbalizing the lines that he’s hearing because he knows what comes next. And that is one of the reasons why mainstreaming won’t work right now. He still has a lot to figure out in the social realm. I certainly prompt him when I can, when I’m there, but most of it he’ll have to do on his own.

Having Autism Vs. Being Autistic

For many years I could not say that Nigel was autistic. I could not say, “My son is autistic.” I would readily tell people “My son has autism,” because to me that was different than calling him autistic. The autism, I accepted. To me, saying someone “has autism” puts the focus on the person rather than the disability. Saying my son “is autistic” makes it sound like the autism is his identity.

But it is. It’s part of his identity.

It took me so long to realize that and accept it. I used to tell friends and family, “We say that Nigel HAS autism rather than he IS autistic, just like you say that someone HAS Down syndrome rather than someone is ‘Down syndromic.'” I’m sure I sounded like I was stuck in some level of denial. I was willing to admit that my son had a disability, but not acknowledge that it was actually part of his personality. 

I’m not sure what changed. Maybe it was a subconscious need to fully process the way autism affected our family. About two years ago, I started saying, “My son is autistic” when mentioning him to strangers or acquaintances. And I was surprised to find that I actually felt comfortable saying it. Sometimes I would say it by myself, quietly, in my room. I would hear the words coming out of my mouth, and with them came a sense of something that resembled peace. Autism didn’t feel as much like this formidable disability when I used that different terminology, the one I had resisted for many years. The word I had told other people not to use: autistic. It was almost a relief that now I could actually say it: My son is autistic! I realized that I had finally truly accepted the autism present in our lives because I embraced it as part of my son’s identity, not just something that he “has.”

My realization was further supported by an interview I recently came across at Natural Learning Concepts, featuring Daniel Hawthorne, a high-functioning autistic adult who was non-verbal until the age of seven. Here is his response to the issue of having autism vs. being autistic:

Do you get upset if you’re called “autistic” rather than “a person with autism?”
“Actually, I prefer to think of myself as being autistic rather than having autism. Autism is pervasive; it affects every facet of my life.  It is not just something I have in the sense that one may have diabetes or epilepsy.  Autism affects the way I think, my personality, my abilities and much more, and I accept it.”

I have come to feel the same way about Nigel. I never thought of autism as a disease (like diabetes or epilepsy mentioned above), but I seemed to think I could refer to it as such, in saying it was something Nigel “had.” I have finally come to terms with the fact that it’s part of who he is. And whether he is able to achieve the high level of functioning that Daniel Hawthorne has, or if he stays the same, or even if he regresses, Nigel will always be the amazing person that he is – my autistic son.

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.