Tag Archives: Friendship

NEHBM

That’s my friend Carrie‘s acronym, NEHBM. It stands for not enough has been made, usually in reference to some little or not-so-little thing that a person in our life says or does that is worthy of appreciation, such as a teacher or aide who shares in our children’s small developmental coups, something that other people might not notice. Such as a friend’s relative who doesn’t mind when our children take off their clothes at a family barbeque. Such as the woman in the public restroom who says “I understand” when our children start screaming because someone flushed a toilet or started the air hand dryer. These are the compassionate people who get it, and NEHBM of the fact that they do.

Our family has been blessed with many people like that over the years (including all three of the ones mentioned above). We’ve also been blessed with some truly wonderful friends. Several years ago, in his quest for friendship, Nigel discovered The Goonies and picked a few boys from his Scout troop to be his group of friends, like he saw in the movie. A few times a year, they would come over to our house to hang out, and Nigel would have them sit on the couch and watch The Goonies while he recited the lines and assigned them roles to play. And they would be compassionate good sports and watch the movie with him, attempting to act out the parts as he directed. But, of course, things change. In recent years, one of the three boys opted not to come around anymore, and another one moved out of state, leaving only one to be Nigel’s remaining “Goonie” friend.

NEHBM of that one friend. A couple of weekends ago, Nigel decided that he wanted to ride his bike over to N‘s house (about a mile and a half away) to see if he wanted to hang out. I suggested that he call N first to make sure he was home before he rode all the way over there, so he did. N wasn’t home and Nigel left a message on their answering machine. He had done this before with the other two friends and not heard back either for several days or not at all. Nigel’s disappointment was always palpable. But that night, N called Nigel back. Not only did he say he was sorry he wasn’t home earlier, he invited Nigel to come over after school one day the following week. Wait – did you catch that italicized part? That sort of thing just doesn’t happen for Nigel, and he was elated. So was I. A few days later, Nigel went over to N‘s house, had a fun visit, and rode his bike home at the agreed-upon time. Like any regular teenager might do. Like autism didn’t matter that day. After a lifetime of always being different, that afternoon was such a gift – both for Nigel and for me.

N‘s mom and I have also become friends over the years, and I can’t thank her enough for being the kind of parent we all wish there were more of, and for raising the kids that we all wish there were more of. Cheryl, my friend, thank you so much for all that you are and all that you do. NEHBM.

What Really Matters, Part 2

These goodbyes are just about killing me. Since school is out, I did what I usually do at the end of every school year – I write a thank you note to those who had worked with my son, telling them how much I appreciate all they’ve done. Only this time, it wasn’t a thank-you-for-the-great-year. It was an I-can’t-thank-you-enough-for-the-difference-you-have-made-in-my-son’s-life.

A few days ago I sent an e-mail to the Regional Autism Consultant for southern Oregon, who has known Nigel since his non-verbal days and worked one-on-one with him years before she took her current position. I think she has worked with my son for twelve years. So I began with, “You’ve been in the picture so long that it’s hard to come up with an adequate way to thank you” and proceeded to express my gratitude for all that she has done, including designing Nigel’s weekly social skills class (and recruiting other students to be in it) specifically for him. Her gracious response made me cry, of course, especially when I read “Nigel brought such wonderful perspective to the social skills group, he was so very open and honest and a very active participant which really made the group successful – I will miss him so very much.”

*

Last week, I took Nigel to his last Scout meeting, where they had a goodbye party for him. Being in this particular Scout troop has been so beneficial for Nigel, for many reasons. As can well be expected (due to terrible news stories about abuse in some Scout troops), a Scout troop is only as successful – and as good – as its leader. And I don’t see how there could possibly be a better Scoutmaster out there. We are so blessed with the troop that Nigel’s been part of for almost six years. Our Scoutmaster is by far the most patient person I’ve ever known. He also truly cares for Nigel. When the party was over and it was time to leave, the Scoutmaster said some generous parting words about Nigel and his progress as a Scout, and then he asked Nigel to stand at the door so that every Scout could shake his hand on their way out. I was so touched, so emotional, that I couldn’t even watch.

Our main consolation, which I keep reminding myself, is that we have close family that we will be able to see much more often in L.A. The boys can spend unlimited time with their father, who has lived there for over eight years. They have an uncle and two aunts there who adore them. And then there is their grandfather, who plans to take them to Thailand later this year. I have missed all of them tremendously over the years that we’ve been apart, and I’m so looking forward to sharing more of our lives with them. But as important as family is, kids – especially teenagers – need their friends.

As we drove home from the Scout party that night, Nigel said to me, “I don’t know if I’ll be able to find such good friends ever again.” And of course that really did me in. I croaked, “Oh, honey. I know that your friends here mean a lot to you, and you’ll miss them so much. But you’ll be able to find new good friends in L.A. And they will find you. Because you are a very friendly, caring person, and good people will always want to be friends with you. I really believe that, Nigel.”

He simply said, “Yeah.” But there was hope in his voice.

*

The boys have gone now. They are in L.A., barbequing and bodysurfing with their dad, while I remain in Oregon (for now) to sell the house. I have started sorting through things and packing, slowly but purposefully. Over the weekend I came across an assignment that Nigel had done in middle school, during a time when he was being bullied relentlessly. It was from around the time that he had taken his yearbook and scribbled on all the faces of the kids who had bullied him, and when I looked at it later I cried because there had been so many scribbled faces. This assignment that I found was a “time capsule” that the teacher said she sends to all the students when they graduate from high school, so that they can remember what middle school was like for them. It had items like “My favorite foods” and “My pets” listed next to a blank line. It listed “Friends” with a blank line after it to write your friends’ names on.

But instead of listing his friends’ names on the line, like most kids would have done, next to the word “Friends,” Nigel had written “many.” Even then, he believed that he had many friends. Even then.

What Really Matters

This isn’t the first time I’ve moved out of state. And it’s not the first time I’ve had to downsize either. But something about this time is so daunting that I haven’t even begun to pack. The boys are leaving in less than two weeks to be with their dad in Los Angeles, and I’m leaving in less than two months to move to Not-Sure-Yet. Now that Nigel won’t be able to go to the special school we wanted him to attend (at least not in the foreseeable future), I have to get to L.A. sooner than originally planned so that I can get him set up at his new school, which is called Not-Sure-Yet High. At least we have it narrowed down to a couple, and the one we choose will of course determine where I get an apartment. Yes, that’s right – apartment. I haven’t lived in an apartment for ten years. The boys were much smaller then and had fewer things! And I’m downsizing a four-bedroom house into a two-bedroom apartment. That should be fun. Time for creative packing! Ever played the “I don’t know, honey, it must have gotten lost in the move” game? And no, the house hasn’t sold yet. This – this planning and packing and changing our lives – is truly an exercise in belief.  

So, due to our impending move, for the past few weeks the boys and I have been the honored recipients of various invitations for get-togethers, barbeques, and goodbye parties. Last month, we had lunch with my 92-year-old grandmother, the boys’ only living great-grandparent. Last weekend, we went with my mom, sister and brother-in-law, and my little nephew to our spot on the coast where we’ve been going every year for nine years. It’s been bittersweet, of course. On the one hand, I am excited to get going, to get a move on (ha! So that’s where he gets it!) and finish the process I’d begun six months ago, when we were fogged in all day at our local airport and I said, That’s it! I’m done! This was also after an extremely cold December, complete with daytime temperatures in single digits, which I’d never experienced in my twenty years of living in southern Oregon. But it wasn’t just the weather, of course. It was a combination of factors, all of which carried far more weight than the weather. And it’s time for those factors to change. On the other hand, it’s so hard to leave our life here behind, and the people in it.

Last night, the boys had their long-time friends over for one last sleepover. I bought two huge pizzas, soda, ice cream, chips, and stuff for homemade waffles in the morning. The boys walked through my front door, all of them now much taller than I am, greeted me in their deep voices, and loped out to our game room, where we’ve had sleepovers for the past seven years. I have watched these little boys become young men!!  (Okay, must not cry on the keyboard now.) And such wonderful young men they are. These friends of Nigel’s have stuck by him through unnerving meltdowns and endless movie echolalia. They were there for him when I had to homeschool him and they were there for him when he returned to regular school. They have given him the gift that every person needs and deserves – friendship. Words cannot express my gratitude. I love these boys.

There are more goodbye parties to come – Tuesday at Boy Scouts and next week at Nigel’s special education classroom. Nigel’s Scoutmaster, who’s known him for over six years, has more patience than anyone I’ve ever met, and Nigel’s special education teacher has put forth every effort to meet his needs, just in the nine months that she’s known him. The facilitator of his social skills class, who has known him since his non-verbal days, actually created the class two years ago just for him. Just for my son, because that’s what he needed. And there are so many others. I sit here tallying up all the people who have touched our lives, who have shown so much kindness to us, even those online whom we have not yet met. It overwhelms me, this downpour of love. We have been truly blessed.

The best part is that, in thinking of all the wonderful friends and family members we will miss, I have been reminded of what’s really important. It’s the people in our lives. It’s not where I’ll live, where I’ll work, where my kids will go to school, and making sure that everything is planned, that we know where every step takes us.  The Not-Sure-Yets will become certainties soon enough. The packing will get done when needed. Somehow it all works out. What really matters is how we love, and how we are loved. We will go forward into our new environment surrounded by the warmth of those who have cared for us, and will continue to from across the miles. And I’m certain that their warmth – their love – will see us through.

Christmas ’08: my sister (and nephew on-the-way!), brother-in-law, Nigel, me, my grandmother, my two aunts, and my mom. Photography by Aidan!

What It’s Like to Have an Autistic Friend

I’ve written before about Nigel’s quest for friendship and his need to be social. He has been fortunate to meet some patient and friendly NT kids through his involvement in Scouting. Continuing with the What It’s Like series, I wanted to highlight a couple of his friends and ask them a few questions. They are brothers; the older one is Nigel’s age, and the younger one is Aidan’s age. Here are their combined responses:

1) How long have you known Nigel?  3 years; 7 years

2) What have you heard or been told about autism?  That just because they have autism doesn’t mean they are stupid. In fact, in some ways they can be smarter than normal.

3) What’s it like hanging out with Nigel?  It’s always fun; awesome – he’s super smart.

4) What ways have you noticed Nigel acting differently?  He gets up close to your face (not all the time).

5) When you’ve witnessed Nigel have what’s called a “meltdown” – become upset about something – how does that make you feel?    It makes me feel sad; sad and guilty.

6) Have you ever witnessed other kids giving him a hard time or bothering him?   Yes; yes, many times.

7) What’s the most difficult part about having an autistic friend?   Getting him to understand; not to get frustrated with him when you want to say something and he keeps cutting you off.

8) What do you like about having an autistic friend?   He’s super smart and has a great imagination – super fun to play with; it’s never boring!

9) Any advice you would like to mention for other kids who might meet someone with autism, or anything else you’d like to add?   Be patient!

A big thank you to Nicholas and Tyler! I appreciate your time in answering my questions, but I appreciate you so much more for being such good friends to Nigel (and Aidan). Our family is very fortunate to know yours. Also, many thanks to your mom, Cheryl, for facilitating the interview. You guys are the best!

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.

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.