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.  

Autism and Death

Nigel had a pet mouse for six months. It was the cutest little beige-colored furry thing. It was his own responsibility to feed him and change his bedding and water, which he faithfully did. Nigel named him Jonathan after Jonathan Brisby in The Secret of NIMH, one of his favorite movies and books. He told me that he held Jonathan every night for five minutes before going to sleep. One morning last week I noticed that Jonathan was curled up in a ball on the floor of his cage and not visibly breathing.

It has been interesting to me over the years to see the progression of Nigel’s acceptance of death. His first experience was at the age of nine, when our first cat, whom we all loved, was hit by a car a mere 50 feet from our house and instantly killed. Our neighbors called to let me know, and I brought the cat into our backyard. I went inside to tell Nigel and Aidan, who had very different reactions. Aidan began sobbing, and as I consoled him, Nigel became very angry and stormed out to the backyard. I hated to leave Aidan as he was, but I had an even worse feeling about Nigel’s state. I found him pulling his bike out of the shed, buckling his helmet (odd that he had remembered), and about ready to ride off, saying, “I’m going to find whoever killed Max and kill them for revenge!” After my initial shock over the length and complexity of his sentence, rare at that age, I somehow was able to diffuse his anger and help him let go of his need for revenge.

Several months later, Nigel and Aidan’s great-grandfather died. He lived a few hundred miles away, and they had only seen him twice, but they sure loved that man. I think Nigel internalized his sadness because he didn’t know how to deal with it. Sometimes now, three years later, he’ll come up to me an hour after his bedtime to say, “I keep thinking about my great-grandfather.” That’s good, I tell him. That way you’ll always remember him. But I’m sure that right now he would want you to get some sleep.

About two months ago, we had another cat die. He was a day-time roamer, but he always came home every evening. I think someone in the neighborhood got tired of him coming in their yard, trapped him, and dumped him on the other side of the highway that runs through town. I found him three weeks later, but he appeared to have been dead for just a week or so. He had been hit on the highway on his way back home to us, loyal cat that he was. So I brought him home to bury him, and Nigel calmly helped me. 

He tells me all the time that he misses that cat, but he has never indicated a desire for revenge, which I am glad to see. And even though I haven’t seen him cry about the death, I know he is dealing with the emotions surrounding it. Last month my father had surgery to remove a tumor, and when I told Nigel about it, he said, “Well, if he dies, just don’t tell me.” At first it sounded like he was being calloused, but I knew what he meant. He didn’t want to know about it because he didn’t want to feel the sadness again. And he knew it would be worse this time.

I am happy to report that my father came through surgery and is recovering very well. Jonathan the mouse, however, didn’t make it. And so, I tried to think of the best way to tell Nigel. I thought of saying, “Have you checked on Jonathan today?” or “I think something’s wrong with Jonathan,” but I settled on the more direct, “Nigel, I’m sorry to tell you this, but Jonathan died in his cage.” When I said it, Nigel stiffened; I could tell that it shocked him. But then he said, “Well, rodents have a short life span.” He went to go look at the mouse, and I asked him if he wanted to help bury him. “No. That would cause too much sadness.” So I did it myself, reflecting on his ability to identify his emotions and knowing what his limits are with how much he can handle. I think that’s pretty amazing. I wish I could have that outlook on my whole life.

Sibling Angst

Aidan

Aidan: Why the heck, Nigel, is your stick in my room?

I overheard Aidan say this last night as I was walking down the hall, and I empathized. I, too, have found Nigel’s sticks in many places throughout the house, including the kitchen, the living room, the car, my desk, and my bed. Nigel’s stick obsession has probably been lifelong, and to the best of my knowledge, neither he nor anyone around him has ever lost an eye, thank God. I’m not sure where this obsession stemmed from, but it’s most assuredly not abating any time soon. And I bet one of the things he loves about Scouts is being able to handle sticks on a regular basis.

But the real reason I’m writing this post tonight is to highlight Aidan. He’s been feeling a little like second fiddle lately, aware of all the writing I’ve been doing about Nigel on this site, even though I’m careful to minimize the screen when he (Aidan) comes in the room. He’s been pretty verbal about his feelings, too, accusing me of going easy on Nigel and not being fair, playing favorites. I try to spend as much alone-time with Aidan as possible, let him know how loved and important he is, but I can imagine it must be so hard for him. What’s not fair is that he’s the younger brother and he always feels like the older brother. What’s not fair is that as much as I try to ease the difficulty of him having a brother with special needs, it’s still there. And it always will be.

Siblings are the unsung heroes of the special needs realm. Parents, therapists, caregivers, and teachers are openly praised – and deservedly so – for all their efforts with those they work with and care for. But the siblings are not often highlighted, and they should be. Some siblings have had to share a room for years and learned to tolerate and sleep through the noises and habits of someone who doesn’t talk, or whose speech is echolalic. Some siblings have gone to the same school and had kids come up to them, many times, to say, “Did you hear what your brother did today?” And in spite of all that and so much more, they take it in stride and learn to love this person who seems so different and strange and often annoying. The siblings know that even if they’d like to poke their autistic brothers in the eye with the very sticks they leave in their rooms, it’s just another thing they’ll have to live with, and they do. Maybe not without exasperation, but with acceptance nonetheless.

Aidan, I’m so proud of you.

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.

Scout’s Honor

Nigel Receiving First Class Rank

Last night was an important night for Nigel! After being involved in his Boy Scout troop for two years, he has advanced to First Class rank, the mid-point on the way to Eagle.

As I have written before, our family has been involved with Boy Scouts for almost four years, and we’ve been fortunate to have gotten to know some really great Scout families during that time. All the kids just let Nigel be Nigel; they tolerate his “fake laugh” (sort of an exaggerated, cackly rendition of the laugh track on old sit-coms), they hold up his end of the flag when he can’t figure out how to hold it during the Court of Honor, and they don’t pick him to recite the Scout Law because he’s uncomfortable getting up in front of everyone. They accept him and for that I am so appreciative. (I guess they wouldn’t be very good Boy Scouts if they didn’t!)

So, he feels like he belongs, and he is slowly but surely working his way towards Eagle Scout. I don’t know if he’ll get all the way there, but he’s definitely learning and enjoying himself. And that’s the whole point.

Extroverted Autism

By nature, or by definition, most autistic people tend to be introverts. It just goes with the territory. But what happens when that is not the case? Is it even possible that a person can be autistic but also be extroverted? How? And wouldn’t that be the ultimate cruel irony? Someone who desperately wants to be social having a developmental issue that makes the very thing he wants be nearly insurmountable to achieve.

I truly believe that Nigel has struggled with this since toddlerhood, possibly even infancy. Long before he was verbal he would try, always unsuccessfully, to interact with his peers. He couldn’t talk, so he went up to them and laughed, only to be misinterpreted with disastrous results. He would try to interact with adults by going up to them and saying their license plate number. He wanted so badly to connect with people, but they were people in a world from which he so desperately needed relief. He couldn’t go into public places because he did not know how to filter all the sounds that bombarded him and caused him such agony. His sensory issues were so extreme that they – and his social issues – prevented him from being true to his social nature and his desire to be a social person.

So, Nigel evolved. He had to if he wanted to interact with people. Various therapies had a lot to do with his success, but I firmly believe that his drive to be social in the first place is what motivated him to keep trying to connect and caused him to respond to the therapy as well as he did. He somehow, over several years’ time, learned to filter out the sounds that prevented him from going into stores, restaurants, public restrooms, etc. He stretched his cognitive skills to not only repeat lines from videos he’d seen, but then he used certain lines and fit them within the context of a situation in order to express himself verbally. He wanted to communicate. It just took him several years to learn how.

It is truly remarkable what he has achieved. I have a friend with adult ADHD, and he has said that on some level he can identify with Nigel because of his own experience with learning to regulate certain aspects of his behavior. It took a lot of time, patience, awareness, and hard work, but the rewards have been well worth it.

I am an introvert. Had I been autistic, I probably would not have talked. I don’t think I would have cared. I enjoy being in my own head so much as it is that, were I autistic, I would most likely love to stay there. I certainly don’t mean to simplify the complexities of autism and the reasons why some autistic individuals learn to talk and some don’t. Nor do I mean to propose that some autistic people just choose not to talk because they are introverts.  But I can’t help but think that the way we are socially wired – introvert or extrovert – has to affect autistic individuals as well. I don’t think that autism would cancel out a person’s natural inclination to be social, if that’s in his or her personality. I see it every day with my son. He just has to try a lot harder than most people.

The Schedule

As those who teach or live with autistic individuals know, schedules are a necessary tool, not only for teaching, but for just getting through the day. For Nigel, his schedule is a lifeline, a beacon to show him the way. It has always been so. When so much about dealing with people is unpredictable, it comforts him to know what he’s supposed to be doing when (of course, this does not usually apply at bedtime).

I found this description of schedules for autistic students at Specialed.us:

Definition: A daily visual schedule is a critical component in a structured environment. A visual schedule will tell the student with autism what activities will occur and in what sequence.

  • Visual schedules are important for children with autism because they:
    • Help address the child’s difficulty with sequential memory and organization of time.
    • Assist children with language comprehension problems to understand what is expected of them (5).
    • Lessen the anxiety level of children with autism, and thus reduce the possible occurrence of challenging behaviors, by providing the structure for the student to organize and predict daily and weekly events.
    • Assist the student in transitioning independently between activities and environments by telling them where they are to go next.
    • Can increase a student’s motivation to complete less desired activities by strategically alternating more preferred with less-preferred activities on the student’s individual visual schedule.

      Example: By placing a “computer” time after “math”, the student may be more motivated to complete math knowing that “computer” time will be next.

    • For the student with autism, the consistent use of a visual schedule is an extremely important skill. It has the potential to increase independent functioning throughout his life – at school, home and community.

Without a doubt, schedules are highly effective tools. But Nigel’s schedules over the years have been much more than that. They have been a type of therapy. And I’m sure they will continue to function as such perhaps for all his life.

Yesterday I wrote about the type of homeschooling program I’m doing with Nigel and how I designed it. Here is his weekly schedule:

homeschool scheduleTime: What we are doing Monday through Thursday
8:00 alarm rings
8:10 out of bed, go to the bathroom, wash face
8:15 eat breakfast, rinse bowl
8:20 brush teeth
8:23 get dressed
8:30 start homeschool: Math: 1 pg of If Mathematics, 1 pg of Core Skills Math
9:00 Writing/Language Arts: 1 pg Quick Practice Writing Skills; Essay Writing, either 1 section with Mom or 1 pg by self
9:30 Science: go online to study topics from Grade Level Standards; take 5 footnotes from websites
10:10 snack & 10-min. break
10:20 Social Science: read books from library or go to websites to study topics from Grade Level Standards; take 5 footnotes from each source
11:00 Physical Education or Library Time
Mon: bike ride on Greenway
Tues: 15 min. yoga/15 min. push-ups & weights
Wed: walk to Phoenix library or drive to TMS library
check out 3 items: 1 social science book, 1 educational DVD, 1 book of choice
Thurs: 15 min. yoga/15 min. push-ups & weights
11:30T/Th Elective for the week (see elective list)
12:00 prepare & eat lunch
12:30 check responsibility chart & do chores for that day: when chores complete, you have free time
Ohomeschool schedulen Fridays I go into the office for a few hours, so that day has a different schedule. Nigel gets up at the same time and then takes one of the aforementioned educational videos, watches it, takes 5 “footnotes,” as he likes to call them, and then types a summary on his computer to show me when I get home. I am fortunate that he has reached a point where he will be okay for a few hours alone at home, following his schedule. Maybe it’s a lifeline for me too.