Monthly Archives: May 2008

Obsession Alert

Nigel: I want our house Rube Goldberged!

Nigel came into my office late last night to tell me this. He had that wild look in his eye. When he was younger the look worried me because it was usually due to something that upset him and he could not communicate to me what it was. A scream would usually be forthcoming. These days, the wild look is more often because something has ignited him, and he goes into obsession mode. A part of me is glad to see it, because that means he is happy and engaged, but a part of me is wary because he has been known to tie strings across the entire backyard or the living room and post signs all over the house regarding his obsessions (he put up six “Fallout shelter in basement” signs during a nuclear war obsession of the week and we don’t have a basement).

And with this particular obsession, Rube Goldberg machines, there would certainly be lots of string involved. Sticks, I’m sure, would also play a major role in Nigel’s Rube Goldberg machine, as would Lego, balls, hammers, nails, many yards of tape and wire, and toilet paper tubes. And he wants to do this throughout the entire house, he told me in his excited voice.

Boy Scouts to the rescue! I dropped him off a few hours ago (Friday afternoon) with the Troop, and they are going on a camping trip. Nigel is excited about it and spent most of the day packing. They will return Sunday afternoon. With any luck, the fire of this particular obsession will dim at least slightly during his two days away from home. Otherwise I’ll have some interesting photos to post.

Words That Must Be Said

Yesterday I wrote about non-verbal communication and Nigel’s development in that area. I ended that post with an anecdote about his emerging ability to read others’ non-verbal communication so that he would not say inappropriate things. On the flip-side of that, I also want to discuss the appropriate things that need to be said, because he often has just as much trouble with those.

“I’m sorry.” Nigel has just recently begun to comprehend the importance of this phrase. I’m sure there were many times that I tried to get him to say it, to parrot it, when he was younger, but the time that I remember the most was when he was 6 and we had some friends’ children visiting at our home for a barbeque, and he was running around chasing them. In retrospect, I should have known that he was too ‘escalated,’ too wound-up to register anything that I said to him. But I was still learning about autism and how it affected him. So he was being chased by a 3-year-old, laughing, probably enjoying the interaction because he always craved it, and Nigel ran into his bedroom and shut the door quickly, not realizing that the 3-year-old’s fingers were already in the door frame. I immediately took the little boy into the kitchen to have someone soak his hand in cold water, and then I went to tell Nigel that he needed to say he was sorry. Again, I was still learning about how autism affected him and I didn’t realize that he couldn’t say sorry because he could not comprehend the word. So when I told him to say it, he just said, “No sorry, no sorry.” I demanded that he say it or he would have to stay in his room the rest of the day. He repeated his “No sorry” mantra and then began screaming.

Two years later, a neighborhood girl verbally provoked him beyong his level of coping, and he allegedly “punched” her. The girl ran to tell me what Nigel had supposedly done, so I took him inside and told him that if someone is bothering him or making him mad, he should come and tell me instead of doing something to them that would get him in trouble. Later, he said he wanted to say he was sorry to her, so I walked him to the driveway and he went up to her and did it on his own. Then, while walking back home, he asked me, “Why do we say ‘sorry’?” He knew what he was supposed to do socially, but he still didn’t understand why. I think that now, at 13, he understands why, because he says it readily and remembers to do it on his own.

“Thank you,” however, he often forgets to say. Often, as in on a daily basis. I know that he understands the reason for saying it, but he just doesn’t do it unless prompted, much to my dismay. I could understand having to prompt him when he was younger, but he’s now a highly verbal 13-year-old! I guess I have to just keep doing what I’m doing, keep up with the repetition, and hope that one of these years he’ll get it.

Greetings are another gray area for him, and always have been. He often greets a household guest by walking up to them and showing them his latest Lego creation. I have to remind him, “Say ‘Hi, Grandma’ and give her a hug!” and then he does. He has to be coached on the phone as well.

I think the reason why these words and phrases are hard for him is because they are vague. They’re not nouns or adjectives or verbs (with the exception of thanking). There’s nothing to visualize. And for someone who is a visual learner, that makes it difficult. For someone who’s also trying to learn, at the same time, how to be socially appropriate, it’s a lot to absorb and apply. He’s mastered sorry, finally. I still have hope for thank you and hello.

Words Best Left Unspoken

Language acquisition is, of course, not just about learning to talk. Non-verbal communication is another confusing realm that autistic people must enter if they wish to interact appropriately.

Initially, Nigel’s non-verbal communication skills were limited to how he could make his needs known non-verbally, since he was not functionally verbal until about age 7. He could talk prior to that age, but most of the words that he spoke were echolalic. If he wanted me to get him something out of the refrigerator, he would take hold of my hand and lead me to the refrigerator and put my hand on the door handle. I would have to guess what he wanted, and a wrong guess would be met with a scream. This was the extent of his non-verbal communication at the time.

He progressed to using PECS, both for his expressive and receptive communication, which was a blessing for both of us, reducing the screaming at least while at home (in public, with his extreme sensory issues, the screaming continued). Once he started uttering one-word need-based requests, his use of PECS at home decreased, and then he moved on to two- and three-word combinations. At that point, the concept of non-verbal communication changed from expressive to receptive.

He started making eye contact. It was fleeting, of course, at first, and only reserved for family members and the most familiar of therapists, but it was there. He started to notice and interpret facial expressions, mostly limited to smiles, but gradually he could interpret the more obvious manifestations of sadness and anger. His favorite one to interpret, still to this day, is tiredness with its unmistakable yawn. “Go sleep?” he would say at age 6. Now, at 13, we hear the beautifully correct and appropriate, “Are you tired?” and even “Why are you putting your head on the desk?”

Nigel’s greatest accomplishment with interpreting non-verbal communication still astounds me, and always will. It happened about six months ago, when his NT friend Riley was at our house for a sleepover. Earlier that week, Nigel had seen me taking my daily birth control pill and asked what it was. I told him in simple terms that it prevented babies from forming in my uterus. Riley’s mother had had a baby a year and a half ago, and now Riley was telling us that his mother was going to have another baby. My sixth sense kicked in, or mother’s intuition, and I knew that the wheels were quickly turning in Nigel’s head. I was seated at the other end of the dinner table from him, and I looked at him fiercely, willing him to look at my wide eyes telling him Don’t say it! Don’t say what you’re going to say! And he started to say, “She should’ve –” and abruptly stopped as soon as he saw my face. It was the first time he caught himself before making an inappropriate comment because he had successfully interpreted non-verbal communication! I was so relieved, and equally amazed. Later I talked with him about the fact that I was glad he stopped himself from saying, “She should’ve taken birth control pills!” I told him that would not have been a polite thing to say. “But I don’t like ‘polite,'” he said, which is what he says when he doesn’t understand something’s purpose. At least if he can continue to interpret non-verbal communication (and not just his mother’s), he stands a chance of learning what’s not polite, and avoiding it.

Mr. Association

Nigel’s language development has always intrigued me. I have written previously about his use of echolalia to communicate and how it progressed through different stages over the years (stages that I identified and labeled on my own: please note that they are not “official”). The teachers and therapists who have worked with him at various times, especially in the early years, but even now, have often commented on his ability to take lines from videos and use them within the context of a situation.

Nigel has always loved the Disney movies, especially the animated ones, but at the age of five he began watching some of the live-action films. He loved The Swiss Family Robinson, and still does. One day, his behavioral therapist, unaware that he had been watching that movie at home, told me that when Nigel got angry at her he had said, “It’s my gun, you’ve got no right to take it!” Imagine the awkwardness as I tried to explain to her that he had taken that line from a movie. I wonder if she was thinking that I routinely left guns laying around the house and reprimanded my children when they picked one up. The movie scene in question was when the older brother took the younger brother’s gun away from him, and the younger brother was angry about it. Nigel said the line as a way to indicate that he was angry about being told to do something he didn’t want to do. When I explained the movie scene to Nigel’s therapist, I could see the relief wash over her face. Then she said, “I understand now! That’s part of why we call him ‘Mr. Association,’ because he’s so good at associating things like that.” 

Quoting lines from videos is no longer Nigel’s primary means of communication, although he still likes to do it occasionally. He also likes to take words or phrases that he remembers from movies, TV shows, or something he picks up online, and try to use them appropriately. Sometimes he is successful with this, other times not. Today during homeschool, while working on subtracting mixed numbers, he did it seamlessly.

Nigel: I don’t want to do subtraction. It’s not really my bag.

Me: Cleaning cat vomit off the carpet is not really my bag, but it still needs to be done.

I think he got the picture.

Insurance Coverage

This seems like a no-brainer. When someone is diagnosed with cancer, insurance (minus deductibles, etc.) covers radiation treatment. When someone is injured and needs physical therapy, insurance covers it. When someone is diagnosed with autism, why is treatment not universally eligible for coverage? According to a recent article featured in the Medford Mail Tribune, thirteen states have currently enacted an insurance mandate for coverage of autism treatment. Thirteen. Out of fifty. How lousy is that? 

We shouldn’t have to fight for this. We shouldn’t have to put on our advocate hats and write to our state representatives and lobby for something that should already be covered. We’re not talking about cosmetic surgery. We’re talking about treatments and therapy that will improve our children’s health and their ability to function.  How the proven benefits of autism treatments come into question by insurance companies is beyond my comprehension.

But even though we all know this issue to be a no-brainer, we will write to our representatives, we will fight for this. Because that’s how things get done, that’s how our children’s needs get met. That’s what we do with the school district and how we raise awareness within our community. We need universal insurance coverage for autism treatments and therapies. Since this is accomplished on an individual state basis, contact your representatives by going to http://www.senate.gov/ and http://www.house.gov/. Let them know you support insurance coverage for autism treatment and therapy and urge them to do the same. 

I plan on telling my representatives about what a difference these treatments have made in my son’s life, and that every parent of an autistic child deserves the opportunity to improve their child’s health, whether they are able to pay for it or not. After all, that’s what insurance is for.

Reflections on Mother’s Day

Fourteen years ago I celebrated my first Mother’s Day as a mother-to-be. My then-husband gave me a card saying what a wonderful mom he knew I’d be, and my own mom gave me a card with the same sentiment. I think back to the person I was then, not having any idea of the depth of emotion I would experience because of the little person in my belly and the one who would come after him.

Being a mother, autism or no autism, has taught me more about life than anything else I’ve experienced. Just the knowledge that it’s my job, my responsibility, to give these guys all the tools they need to lead a successful, happy life is enough to blow my mind. There are plenty of articles and books out there about how to raise good kids, how to be a better parent, but nothing can really prepare you. You have to jump in with both feet and just trust that you’ll be okay. That you’re going to make a few mistakes, and you’ll run into a few rough spots, but you’ll handle them. You’ll get through it and keep going.

As we moms know, being a mother isn’t always easy but it’s always worth it. We live for the days when we take our kids somewhere that they thought would be boring, and then not only can we tell that they really like it (as we knew they would), but they come up to us and hug us and say, “I really like this place, Mom. Thanks for taking me.” (That was Aidan at a museum last weekend.) And we live for the days when our children receive special awards or when, for the first time, they apologize for their behavior on their own instead of us having to do it (that was Nigel recently). We savor the triumphs, be they large or small, and think We’re getting there. I must be doing something right.

And the day will come when they are on their own. Even those of us with differently-abled kids will go through this change, on some level. I often wonder how I will feel when that time comes. How hard will it be to let go? It’s hard enough for me to let them ride their bikes to the grocery store! But I take comfort in the idea that it will happen little by little, just like how Nigel learned to talk, how he’s learning to be responsible for himself. I also take comfort in knowing that I will always be their mom. Nothing will change that.

So, here’s to all the good moms, like my own (love you, Mom!), and my friends who keep me sane. We need all the support we can get, in all the mothering stages of our lives.

Sheba

Sheba

We have a new little girl in our family! She is so sweet, inquisitive, and pretty! We are all in love with her already. She came with the name (from the local animal shelter), and we decided to keep it because she answers to that. She curled up for a nap after exploring the house for four hours. Nigel was quick to point out, “She’s our own Queen of Sheba.” Midnight, our other cat, is not yet convinced.

Tonight is movie night with the boys; we are making raspberry snowcones and watching Best in Show, one of our favorites. TGIF!

Our GF/CF Experience

As I contemplate making old-fashioned macaroni and cheese for dinner tonight, it reminds me that I have been meaning to write a post about the whole GF/CF (gluten-free/casein-free) topic. Over the years, and especially lately with the hey-day surrounding Jennifer McCarthy’s book, my family and friends have forwarded various articles about the GF/CF diet to me, asked if I’ve read the book, or asked me if I might like to try the diet with Nigel. Here’s the short answer: Been there, done that.

Back in 2000, when Nigel was five and a half, I was on one of my every-three-month trips to Barnes & Noble in search of new autism books. Facing Autism by Lynn M. Hamilton had just come out, and that’s when I first heard of the GF/CF diet. I thought, This is it! This has to work! It made sense. And I was so motivated after reading about the positive results: the increase in language, the decrease of problem behavior, the ability to focus and improve cognitive skills. I so wanted this to work, believed that it would. I immediately went to our local natural foods store and purchased GF/CF bread, cereal, cheese, soy milk, yogurt – everything Nigel would eat. And he ate it. I could tell he didn’t really like it and wasn’t too enthusiastic about it. But I had him stick to it because I knew consistency was key to having the diet work. I told his teachers and therapists so that they wouldn’t give him regular milk and bread or crackers at school. I was so optimistic. Thought I had all the bases covered, that my years of research would finally pay off.

And so I watched my son, hoping to see some improvement after the first week or two. And then going into the third week I began to realize that, not only was he not improving, not talking more, he was actually regressing. I thought, Okay, maybe it will take a little longer. We’ll stick it out. And then going into the fourth week I began to notice that he was looking sickly, he had dark circles under his eyes, was lethargic and had very little appetite. By the fifth week he was even worse, and I had to admit that it was not helping at all. So I scrapped the GF/CF diet, let him start eating the foods he had eaten previously, and within a week he was back to his normal, healthy, neuro-diverse self.

I’m really glad that I tried the diet. If I hadn’t, I would have always wondered, every day. And I’m truly happy for Jenny McCarthy and all the many parents who have experienced such wonderful success with the GF/CF diet. I wish I could be in that group. I would be a huge advocate of GF/CF, shouting it to the world. And I’m glad that Jenny McCarthy wrote her book, so that more awareness could be raised about the diet and its effectiveness. But the fact is that it doesn’t work for everyone, like every other type of autism intervention therapy out there. In a way, though, I am an advocate for GF/CF, because I highly recommend to every parent of an autistic child: Try it. It might work for your child. And what would be more wonderful than that?

Brotherly Love

Aidan left Monday morning for four days at ROS (Resident Outdoor School) at a camp about an hour away in the mountains. Tonight they are having family night there, when all the parents and siblings are invited to the campfire program. As I dropped Aidan off at school Monday morning, I told him I’d see him Wednesday night for the program.

Aidan: Is it just you coming?

Me: No, Nigel’s coming, too. I don’t want to leave him alone that long when I’m not close enough to come home quickly if there’s a problem.

Aidan: Then don’t come at all! I don’t want Nigel there!

I didn’t want to force the issue. Aidan was probably looking forward to some time away from his brother, time when he didn’t have to think about how his brother was acting and how it might easily embarrass him. It must be hard to be eleven and to be concerned about that so often.

So I went home and got Nigel up for homeschool. I started to prepare breakfast.

Nigel: You took Aidan for ROS this morning?

Me: Yes. He’ll be back Thursday afternoon.

Nigel: Yes! Three and a half days without the pesky little brother!

Nigel then proceeded to somersault throughout the house in jubilation. So much for brotherly love. I suppose I should be glad that there are some things about his development that are entirely typical.

Targeting Autism: A Review

Targeting Autism

Ten years since its initial publication (1998), Targeting Autism is in its third edition, a testament to the book’s importance and author Shirley Cohen’s excellent writing. I about cried with relief when I saw this book on the store’s shelf back in 1998. I needed something to help my extended family understand autism and what we were dealing with. I also needed something for myself that would give me a better picture of what to expect for my son’s future. Targeting Autism addressed both of those needs and more.

My first-edition copy is dog-eared and filled with underlined passages. It certainly made the rounds among my family and friends during the early years of my son’s diagnosis! I took a look online to see what changes had been made to the later edition, and it appears that Cohen provides specifics about new developments in the world of autism (including an appendix listing diagnostic criteria for Asperger’s, which was not widely known when the book was first published). Aside from those additions, the book still follows its original outline, starting off with a general description of autism and how the manifestations of it are so varied. It mentions hyperlexia (which my son exhibited) and other unusual abilities, and also compares autism to disorders such as Landau-Kleffner syndrome, Fragile X, and obsessive-compulsive disorder. The next chapter features insightful quotes from autistic individuals who describe what it is like to be autistic and how they felt growing up, fearful and unable to communicate, and later learning about emotions and social expectations. Following that is a chapter about how development progresses at various stages of life: infants and toddlers, preschool, middle childhood, adolescence and young adulthood. It discusses behavior patterns, sensory issues, echolalia, and language development, among other subjects. Here, Cohen inserts many quotes from parents about their autistic children at various ages and levels of severity, which is quite helpful. The next chapter specifically addresses family issues: the stress on parents and siblings and the importance of a support network. 

Part Two discusses treatment. The first chapter highlights the Lovaas treatment: intensive, 40-to-60-hours-a-week behavioral therapy once thought to be the road to recovery. However, as Cohen ends the chapter, “A distinguished psychiatrist . . . replies that in his contact with over eight hundred individuals with autism he has never seen a person who has recovered. What he has seen is symptom remission with near-normal functioning.” The next chapter mentions other types of less extreme behavioral and nonbehavioral treatments, such as mirroring and reciprocal play. It gets a bit technical while discussing the various intervention therapies and educational programs, including TEACHH (Treatment and Education of Autistic and Related Communication-Handicapped Children) and how it compares to the Lovaas method, but it is essential for parents wanting to know what is out there, so that they can continue to do their own research. The following chapter addresses the issue of treatment availability and funding, and the general topic of advocacy, and the last chapter of this section discusses various alternative therapies, such as supplements like B6 and magnesium and GF/CF diets, auditory integration training (AIT), sensory integration, and facilitated communication.

Part three begins with an interesting commentary on recovery and the different ways it can be interpreted and defined, including a discussion about the Son-Rise program. The final chapter of the book, Moving Toward Better Answers, discusses the future of autism research, treatment (including medication), and public resources. Overall, Targeting Autism is an impressive proponent of advocacy. Cohen ends by stressing educational planning on an individual basis, especially to meet the needs of adolescents and adults so that they may lead productive and satisfying lives.

I highly recommend this book. Even ten years after I first read it, I still pick up something new and valuable each time I reread it.