Tag Archives: Emotions

Summer Blues

Is summer over yet?

Don’t get me wrong. I’m a heat-seeker. I thrive on the warmth, crave it all year. So I love the weather. But I hate missing my kids.

This is their ninth summer in Los Angeles with their dad, 700 miles away from me. For nine summers I have sat at my desk and stared at their pictures and talked to them on the phone. My “conversations” with Neil haven’t always been on track, but he’s gotten better as the years have gone by. And I’m just glad that he has the ability to talk on the phone in the first place. Because that wasn’t always the case. These nine years have brought so many changes.

So I sit here, looking at my desk photos, clicking through summer posts from 2008 and 2009, wondering what the heck I wrote about when my kids weren’t even here. I wrote about several phone conversations, and I did a series on Neil’s early development. I wrote book reviews and posted about miscellaneous autism and special needs topics. Last summer I wrote about my incredible trip to Nepal for autism education.

But this summer I find myself at a loss for material. My main sources of inspiration are not in my presence to say funny or profound things. Our phone conversations consist of what-did-you-do-today and I-miss-you and the occasional movie idea/obsession monologue.

But the real reason is that I’m not at my emotional best right now. I’m disjointed without my boys, I’m disappointed that my moving plans aren’t coming together, and I’m disheartened in general. Plan B will go into effect soon, and it’s a letdown. I can dress it up and say that I’m hopeful, but it’s not at all what I had hoped for. It just doesn’t seem right – or fair – to have the blues in the summer. But I do.

Photo: Late summer, Crater Lake, Oregon

A Normal Man

Image credit: simon gray 

*

Sometimes, as a mom blogger, I get the feeling that my kids somehow tap into the wavelength of a post I’ve written – before I even post it. And then they come to me and totally disprove whatever I’ve written about them.

For instance, the night that I wrote “Polite Conversation,” about Neil using lengthy delayed echolalia at the dinner table one evening, he came into my office – minutes before I posted it – and began what was undoubtedly the most incredible conversation I’ve ever had with him.  I honestly didn’t realize that he was capable of a serious back-and-forth discussion regarding intangible ideas for over half an hour. And he revealed so much more about himself during the course of it.

He started off by running into my office, eyes wide. “Mom! Have you heard of something called ‘home births’? Because I think I want to have my children that way and I wanted to see what you thought of it.”

Definitely didn’t see that coming. “Yes, I’ve heard of them. But I think that you should talk to your wife about it first. And I don’t think you need to worry about that for a long time.”

“You mean when I’m 18?”

(!) “No, I think that’s a bit early. You need to have a good job and a home for your family before you start thinking about having children.”

“20?”

“I think that’s a bit early also.”

“Well, I need to be prepared.” That’s six years of Scouting talking.

Then he sat down on a chair that’s across from my desk, and the topic changed to dating. He mentioned, quite wisely, that he needed to have a girlfriend before he could have a wife, and that there didn’t seem to be any girls at the high school who really understood him. He said that some of them were nice to him, but he was worried that they might not be sincere. “What if they ask me out on a date, but they’re just trying to trick me? How will I know the difference?”

My heart ached to hear him say it. He already knows that he is vulnerable to this. I told him that one thing that will help is to be friends with a girl before dating. And then, I pulled out my new copy of The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism by Temple Grandin and Sean Barron. It had just arrived from Amazon mere days before, and I had been waiting for the perfect opportunity to tell Neil about it. I couldn’t have planned this better if I tried.

He seemed interested. I asked him if he wanted to read it himself or if he wanted us to read it together, and he opted to read it on his own. I was thrilled by his positive response! Somehow I had tapped into what he needed – before he even asked. But of course, we autism parents do that all the time, especially when our kids can’t ask.

We talked some more. We conversed. He made eye contact, he posed ideas and waited for my response, and then he responded to my ideas. Sometimes he added even more to his response. His voice inflection was perfectly appropriate, he tried new words and asked me if he used them correctly, he was fully engaged. My heart was bursting with joy, because for many years I didn’t know if such conversations could ever take place.

Then at one point he leaned forward in his chair and said, “I think I’m different from other autistics because I want to be a normal man and have a wife and family.”

I tried not to let my face show too much emotion, but lately my son has been causing me to tear up a lot. “Oh, honey. Yes, your autism makes you different and makes some things more difficult to achieve, but don’t ever think that you can’t be a normal man if you don’t have a wife and family. Whatever you do with your life, you will always be a normal man. In fact, better than normal.” I got up, walked over to him, and gave him a hug, which he stiffly accepted (the usual for him).

He left then, book in hand, and I couldn’t help but cry. I always think about my son’s future and how different things will be for him. But what I hadn’t thought about is the now unmistakable fact that he is also thinking about his future, his adulthood. And then I remembered something that I had forgotten to tell him. Something I wanted to make sure he knew. I dried my eyes and walked to his room.

“Neil, I just wanted to tell you that when you’re an adult, I’ll still be here to help you, to talk with you. I’ll always be there for you.”

He paused a moment, taking that in. Then he said, “Good, because I don’t know how to get grants for college.”

Oh, honey. I got you covered.

About Face

Clenched teeth and narrow eyes? Angry. Tears streaming down face? Sad. Smile? Happy. Open mouth and wide eyes? Scared. Furrowed brow and tight lips? Not sure.

Over the years, Nigel has learned to read the cues of basic emotions and identify them, but he has yet to do the same for emotions that are less easily recognized, such as worry, relief, disinterest, embarrassment, confusion, and disappointment. They talk about these in his social skills class, and we talk about them at home, of course, but it’s hard for him to catch on. And it’s always difficult to apply the situations of Social Skills Class to the real world, although it’s certainly worth trying. Today, however, I stumbled across a more effective method.

It’s Disaster Movie Weekend here at Chez Nigel, during which he watches everything but the 2008 parody/spoof called Disaster Movie, which, he says, is not a real disaster movie. After cleaning his room more thoroughly than ever before, he was rewarded with a full movie weekend while Mom works (mostly) unhindered in her office, appearing only to make dinner (that was the plan, anyway). Nigel began with various Godzilla flicks, moved on to Deep Impact, Core, Volcano, and finished with his favorites, Twister and The Day After Tomorrow.

I’ve never been able to figure out why he enjoys these types of movies so much, but he has for a long time. He first saw Twister at the age of five, and has loved it ever since. He’ll rarely go more than a few weeks without watching it. Then a few years ago came The Day After Tomorrow, and all I can say is at least we now have an alternative to Twister. DAT has everything he loves about disaster movies – imminent destruction and earnest people trying to either stop it from happening or survive it. He doesn’t care about the writing or the acting. He doesn’t care if the movie got bad reviews. He’s just concerned with the main idea and the special effects (although he lets that slide for the old Godzilla movies he holds so dear).

So he’s watching The Day After Tomorrow out in the living room, and I venture out of my office in the early afternoon to facilitate lunch. I come and stand beside the couch, watching a scene near the end in which the father is reunited with his teenage son, for whom he had been searching. I’ve unwillingly watched this scene (and the whole movie) several times before, but something – my frame of mind, the loving energy that filled our home this weekend, something – makes it affect me differently this time. I stand there watching the scene, feeling emotional and trying to fight it. I think that I’m keeping it low-key and don’t think my appearance is that noticeable.

Nigel looks at me and says, “Your face. It’s making some sort of expression.”

And then I about lose it. My breath catches in my throat, and I have to turn away as tears pool in my eyes. He noticed! He didn’t know what the expression was for, but he noticed a subtle facial cue! I dab my eyes and compose myself, then turn back to my son.

“Yes, Nigel, it’s an expression of emotion. I was just feeling how the father felt in the movie when he found his son and hugged him. He was happy, but all the anxiety that he felt while looking for him just built up in that moment and made him emotional. Does that make sense to you?”

“I think so.”

I tell him how great it is that he’s starting to notice the subtle expressions of emotion that people show, not just the more obvious ones of anger, sadness, happiness, or fear. Like talking, like writing, like learning to be polite, this is probably something that will take him a long time to develop. But the fledgling ability is there, and I am pleasantly surprised.

I am equally surprised that I got choked up over The Day After Tomorrow. Next thing you know, I’ll be crying at life insurance commercials. I may have a harder time explaining that!

5 Ways to Feel Positive

Lately I find myself vacillating between extremes of emotion – either blissfully happy or sobbing without reason. Infinitely patient or agitated beyond control. Supremely confident or a bundle of nerves. They’re not so much mood swings as what I call “outlook swings.”

Two weeks ago, I was on top of the world, and not because of any tangible thing. I was filled with a sense of gratitude for every aspect of my life – giddy, almost. It was like I was high on gratitude, just for living. It was nice, but it was also unnatural. It was an extreme positive outlook – so extreme that it had to swing back the other way. My sadness last week came on me like a truck. Granted, I had a lot on my plate with being nervous about Nigel going back to regular school and Aidan’s mystery ailment. But I allowed that anxiety to infect other areas of my life that I needn’t have, like my self-esteem. I suddenly found myself way more negative than I am ever comfortable being. It was the other extreme. Fortunately it subsided with a phone call to a friend.

So how else do we deal with the unavoidable weepy bug? How can we regain our positive outlook when we feel like we have to take on the world (or that the world is taking us on)? My outlook swings have finally normalized (for the time being), and I think it’s because I did all of these things:

  • I realized that the kids are all right. Yes, one is adjusting to an environment that used to be very difficult for him, but at this moment he is happily watching Winnie the Pooh in his room. And yes, the other one has some unknown health issues that I’m very worried about, but at this moment he is not in pain and he is listening to Bob Marley in his room. These boys are my world. And as long as they’re okay, I can handle whatever is thrown at me.
  • I’ve got a job and a home and good health. Yes, this smacks of being told to be thankful for your dinner because there are kids starving in other parts of the world, but sometimes I have to remind myself that my life could be worse.
  • I let myself be sad for awhile. There IS a reason for it, even if I can’t see it. And even though my life “could be worse,” sometimes it’s tough enough to warrant a few frustrated tears.  And everyone always has a right to feel the way they do. So if you’re sad, own it. You do have a reason, and it is valid.
  • I called a friend. Let me say that again, because it’s not something I normally do. I called a friend. Usually I’m a go-it-alone person. I often have to force myself to ask for help. I don’t know why; it’s just the way I am. Maybe because I’ve been on my own for so long, I’ve had to be that way, even when the chips were down. But not this time. I felt the need to talk it out, and it helped immensely.
  • I recited affirmations. Nigel is calm and comfortable at school. Aidan’s body is healing. I am working toward my goals. My life is right on schedule. I enjoy life. I am where I am supposed to be.* I recite these in my mind throughout my day, and before I go to sleep. It’s also helpful to write them on Post-It notes and stick them around the house where you will see them periodically (bathroom mirror, refrigerator, wine rack).

*Note: Affirmations are generally not as effective when you’re in the middle of a crying jag.

New Year, New Behavior

Often at the start of a new year, we note things that we would like to change about ourselves or our lives. We make resolutions and take steps to lose weight, be healthier, save money, or achieve a goal.  We are determined to improve.

Yesterday, I began preparing Nigel for his doctor appointment at the end of this week. He tends to detest these medication-management appointments, being asked to rate his mood, and answer other questions that he would rather not. So I thought that I’d prepare him a few days ahead of time, asking him some of the questions that I recall the doctor asking previously, so that Nigel can start thinking about his answers. “How would you rate your mood?” I asked.

“Fine,” he answered as usual. Then he added, “But I don’t see any changes.”

Surprised and intrigued at this part about “changes,” I pressed further. “What changes are you hoping to see?”

“My behavior. I want to not get angry so much so that I can go back to regular school.”

And my heart thumped as I understood what I had always wondered. Even though Nigel is much calmer with homeschooling than with mainstreaming, he is an extroverted autist, and he misses being in a more social environment. Even though he is regularly involved in Boy Scouts and attends a weekly social skills class, it’s not enough for him. He craves more. The sad part in all of this is that, because of his autism, he usually can’t handle more. It is very difficult for him to regulate his behavior and emotions. He is learning, but I’m hoping there is some medication that can help him with this. He has been on Zoloft to help with his OCD symptoms and anxiety, and that has been beneficial. I explained to him that the medication that he’s been on is not designed to help with behavior modification, but that there might be medication available that can help with that. One of his problems is that when kids do or say something to purposely agitate or upset him, he blows up, and he’s not able to regulate himself. Then he ends up getting in trouble, and it becomes a vicious cycle, because it’s fun for the bullies to upset him. Suggesting to him that he “ignore” them does not work for him. He is not able to ignore them (in my opinion, they should not be doing it in the first place, but that is another issue).

I don’t know if there is a type of medication that can help him with his behavior. We’ll be discussing it with his doctor, but if any readers have any suggestions, please let me know. I’d love to have Nigel be able to attend the local public school, at least part-time, because it would mean so much to him. His new year’s resolution is to go back, and I want to help him achieve that goal.

Sharing the Gifts

gifts

Six months ago, Aidan graduated from elementary school.  On that day, I realized that not only was I proud of my own son for his accomplishments, I was also proud of his classmates. I had watched those kids grow up for the past six years, cared about them, and I shared with their parents the emotion of that special day.

Now, as we celebrate the holidays and this year comes to a close, I realize that I feel the same way about a different group of kids and their parents. I have been fortunate to get to know many families who live with autism. And I appreciate this connection so much. I love how happy I feel when I read about a non-verbal child who finds a way to communicate, or a teen attending his own IEP, or a child who is able to show empathy. I am awed by a teen’s insight in processing something emotionally difficult. And I feel triumphant when our children, no matter what age, are able to overcome sensory issues so that they can attend a huge birthday party, or even go to a nightclub! I feel as strongly about their accomplishments as I do about those of my own children.

These are the gifts that we share. I feel so blessed to have come to know all of you – those I mentioned in this post and many more. I wish all of you a beautiful holiday. However you celebrate the season, I hope it is filled with peace, love, and abundant joy.

Learning to Write

As I had written in a previous post, I believed that once Nigel learned to write, that would “liberate him to no end.” Last night I came across a description I wrote seven years ago about Nigel learning to write:

Near the end of the year, Nigel began printing his name. Just a month before, he refused to hold any writing utensil, as he had been doing since age three when we first tried to get him to scribble; he seemed to have an aversion to holding pens, pencils, crayons, and markers. But now, at six, he has begun. Being a bit of a perfectionist, he gets very frustrated with himself because he has trouble making the letter G, both big and small. But he perseveres, and now, just three months later, he writes full sentences, short “letters,” even. (“Dear mom, Mom get string cheese, Love mom” – I’ve tried to tell him that he needs to say “Love, Nigel” on his letters so that the people know they’re from him, but I guess he thinks, Why wouldn’t you know who it was from? I just handed this to you, so you must know it’s from ME.)

He has also started drawing for the first time, which is fabulous. The first things he drew were little cars with smiley faces. I will always remember how happy I was when he started writing and drawing. The first night he did, he came to me and asked me to “write a letter to Tigger.” I told him I was washing dishes and I would do it as soon as I was finished. A few minutes later, I turned around and there he was at the kitchen table, hunched over a piece of paper, writing diligently, struggling with the Gs in Tigger. I looked over his shoulder just as he was finishing, and saw that he had written, “Dear Tigger, jumps note, Piglet and Pooh.” He put it in an envelope because he wanted to mail it to him.

Since then, Nigel has been writing and drawing every day. He went through a sign-making phase. He put up signs all over the house saying things like, “Warning: Do not let mom out of the house” on the back door, “No children allowed” inside the front door of Aaron’s [his father’s] house, “No smoking,” on Aaron’s closet door, “Reward: Do not let dogs out of the cage” on his and Aidan’s bedroom door, and several “Missing: Stuart Little” signs all over the living room when he couldn’t find his Stuart Little video. Currently, he has been drawing traffic lights and houses. He also recently drew an adult male lion and a lion cub, and when I asked him who it was, he said, “Simba and his dad.” I initially thought that Nigel’s writing and drawing would be a way to communicate his needs, but it has revealed more about his emotions and priorities than I ever would have imagined.

The Autism Club

When I was in high school I had a good friend I’ll call Eddy. Eddy and I were in several of the same classes since freshman year, and by junior year, we had become pretty close. We never dated, but we talked a lot, and one day during class he ran out, visibly upset, and the teacher suggested I go check on him. I found him sitting on the steps of the side entrance of the building, and I sat next to him and gave him a hug. He told me that he was coming to terms with the fact that he was gay. He didn’t know how to tell anyone; he felt confused and a little scared. I assured him I would be there for him.

Months later, Eddy felt better and more sure of himself. His family had responded positively to the news and his friends supported him. He said that he couldn’t believe that it was happening to him. He had read and heard about people being gay, but until he acknowledged that he was, he never realized what it would be like, how it would affect him. He said that he felt like now he belonged to The Gay Club. And that it would determine the rest of his life.

I certainly didn’t feel it at first, but over the years I have come to realize that with my son’s diagnosis I was granted lifetime membership in The Autism Club. I had read and heard about autism, but I had no idea what it was like until, through him, it became present in my life. I never realized how that would affect our whole family.

I’m sure it’s the same for any parent of a child with a disability. You start going to all the IEP meetings, the team meetings with therapists, the therapy appointments, dealing with trying to take your child out in public, finding a good fit with a program or school and changing frequently when it doesn’t fit. You come to terms with how the disability affects all the family members, now and in the future. You realize that your lives are going to be different than those of your neighbors, and even your friends. You wonder how it will affect your other child, having a special needs sibling.

So you go to the meetings, you do what you need to do, you give attention and show empathy to your other child, and somehow, as the years go by you realize that you are functioning, you are doing this. Life goes on. It’s different, it’s not how you thought it would be, not what you would have wished for yourself and your children, but it’s okay.

Some might think I’m trivializing the experience by calling it The Autism Club. It is in no way trivial, and I know that only too well. It affects me deeply. I realize that I’m not the one who lives with it, but I am connected for life to the one who does. There are millions of parents of autistic kids, all going through what I go through. And that makes me feel like we’re all part of some special club or association. We didn’t ask to join. But we’re making the best of it. And it’s good to know that we’re not alone.

Bravery

Every few years I undergo a relatively drastic hairstyle change. Sometimes it is circumstantial: I am experiencing major changes in some other area of my life, and my hairstyle change is symbolic of that. At other times it’s because my hair is down to my lower back, and it’s just too much work at that length! Off with it!

Last week my hair was reaching beyond the middle of my back, the sun was out, and I had it cut. I think this time it was as much because it was too long as it was a metaphor for the changes going on in my life. I came to the realization a few months ago that Neil can no longer be mainstreamed, as he was (with an extensive support system) for four years. I radically altered my life, my schedule, my finances, and my ideas so that I could wrap my mind around the concept of homeschooling him, and found ways to make it happen. (I plan to write about that subject in detail for a future post.) And now I am doing it. I drastically cut back on my hours in the office at my job, I found some work I can do from home, and I am now my son’s teacher.

It was a huge change, and I am still reeling from it, even though it is positive. It is scary financially, since I am a single parent. And it comes with so many other adjustments that must be made: emotional, physical, social. So when I’m at the hair salon, and the other patrons and stylists who witness my middle-of-the-back hair being cut into a chin-length shattered bob comment on how brave I am to do that, I say It’s only hair.

Getting my hair cut short doesn’t make me brave. Being a single parent? Sometimes brave. Raising an autistic child and his younger brother? Usually. Homeschooling my autistic son while being a single parent? Reducing my work hours from 30 hours a week to 6, thus reducing my income?

And then I think of Neil, trying to navigate middle school without any support system in place (how could I have let the IEP ‘team’ convince me that he would be fine with that?!) and dealing with the constant harassment and bullying he experienced, just trying to get through his day, pulling out his hair because of the eternal state of anxiety he was in, and I know. He is the brave one. He was brave to make that first leap to try to learn to talk by repeating lines from videos, trying to fit the lines within the context of the real situation. He was brave to learn how to filter all the sounds that were agonizing to him. He was brave to want to take the regular school bus, because he wanted “to be like everybody else.” That’s all he wanted, and they treated him so terribly. Yet he went back, every day, and he always tried so hard. Finally, he reached his limit, and he begged me to homeschool him. That was brave too.

Maybe the little things like getting my hair cut short are brave. But when you live with autism, it puts a different perspective on things. And it makes you define bravery in a whole new way.

Image credit: Photo by Gerla Brakkee 

Autism Acronyms

Life with autism is full of acronyms. From the first IFSP (Individualized Family Service Plan) meeting and the use of PECS (Picture Exchange Communication System) to the last IEP (Individual Education Plan), we SPED (Special Education) parents are bombarded with a list of acronyms to learn and use. It seems like such an odd element of an already challenging existence.

I remember being at Neil’s first IFSP meeting, when he was three. I felt overwhelmed and underinformed. Back in 1997, autism was not the buzzword it is now. Most parents of now-teens experienced untold frustration trying to research autism information, therapy, symptoms, etc., when their children were first diagnosed. The internet was not the resource it is today, and all the books I could find on autism were archaic, bleak, and (I felt at the time) of no help to me. My local Barnes & Noble had two books on autism: Let Me Hear Your Voice, by Catherine Maurice, and The Siege, by Clara Claiborne Clark. I flipped through both of them there in the store, got a lump in my throat, felt the desire to slip into denial (the ‘how could he be autistic? he smiles and lets me hug him!’ self-talk), and left. I did wind up reading those books at a later date, and I came to consider them an invaluable source of encouragement. Back then I wasn’t ready.

I went to that first IFSP meeting blind. The therapists started talking about PECS, SI (Sensory Integration), and OT (Occupational Therapy) and I was completely lost. It wasn’t until months later that I learned that the intensive program that Neil was enrolled in was actually ABA (Applied Behavior Analysis) -based. I learned about various other therapies, including AIT (Auditory Integration Training), FC (Facilitated Communication), and later, the GF/CF (gluten-free/casein-free) diet. When I had internet service I looked up the DAN (Defeat Autism Now) program and joined ASA (Autism Society of America) and read about the federal Individuals with Disabilities Education Act (IDEA). I needed a glossary to keep them all straight.

Now when I go to my local Barnes & Noble, there is an entire section devoted to autism-related topics, not just two books mixed in the Special Needs shelf (yes, in 1997 there was only a single shelf for all books on special needs children). And now on their website, under the category of Autism and Asperger’s Syndrome, there are 26 subtopics listed and 462 individual books available having to do with autism. That is amazing to me, and wonderful. And many of them have glossaries defining all the autism acronyms I’ve come to know and love.