Comes the Dawn

Recently I wrote about experiencing setbacks with Nigel’s development and how it gets me down. It seems like I’ll never get a break. But what I didn’t remember is that usually when setbacks occur, soon afterward something happens that’s positive, a step in the right direction. And that’s exactly what happened today.

The school subject that Nigel has the most trouble with is math. Yes, math. Is that “anti-autistic?” I seem to read so much about how math appeals to autistic people because of the formulas, the predictability of working with numbers, and I don’t know why else because I’ve never liked math, so trying to come up with reasons to like it is a stretch for me. But I’ve always done okay with it, learned the basics, use them regularly, and identify the importance of mathematical knowledge as I’m trying to teach Nigel. But he has so much trouble with it (and no interest – must be genetic), that even when we go over the same problems and I walk him through so many and do them with him, he still doesn’t get it. After working on multiplying fractions for close to two weeks with no hope of him retaining any of it, I wasn’t sure what to do.

Then I remembered: break it down into written steps. That’s the only way I’ve been able to get him to pick up his room. That’s how some of his classroom teachers got him to work on activities and follow directions. And that’s how he was able to just get through the day when he was younger: having a schedule broken down into steps. I decided to break down the steps of what he was having the most trouble with – changing improper fractions into mixed numbers. Here is what I wrote for him:

Steps to convert improper fractions to mixed numbers:

1) Divide the numerator (# on top) by the denominator (# on bottom)

2) Write down the whole #

3) Multiply the whole # by the denominator

4) Subtract that # from the numerator

5) Answer is the new numerator for mixed #, placed over same denominator

He did the next problem completely unassisted in less than two minutes. I have to remember to break things down into written steps more often. Why do I forget? It should be common sense to me by now! Maybe I’ll remember better now, since I’ve written about it here. I think that’s something that works for both of us. 

Before Paragraphs: Typing

Because of Nigel’s aversion to holding a writing instrument, and his earlier difficulty with acquiring verbal skills, I had always thought that learning to type would liberate him to no end. He had taught himself to read at three and a half, so I didn’t think it was too much of a stretch.

I had purchased a kids’ learn-to-type CD-Rom program years ago, when he was about seven, but he had been resistent to working with it until we started homeschooling three months ago. Maybe it seemed academic to him and he didn’t want to do “work” outside of school. When school became something he did at home, he was only too happy to work with the typing CD-Rom during the designated time for electives. And he loves it.

That probably has something to do with the fact that the CD-Rom is by Disney – Adventures in Typing with Timon and Pumbaa. The Lion King was the first Disney movie he saw that motivated him to try to quote single words, his first attempts at echolalia. And I had seen it on the big screen when I was pregnant with him, so it’s always been a special movie for me as well. But now I love it because it has motivated Nigel to learn to type, and he’s enjoying it. He typed the horse video summary by himself, as well as several others. He says he’s going to type up a list of all his invention ideas.

So, typing, paragraphs . . . maybe next a mini-essay? A blog post? Not quite yet, but someday, quite possibly soon.

Paragraph Practice

As part of our homeschool program, I am trying, ambitiously, to teach Nigel how to write essays, since he will need this skill to achieve any success in his future academic career. It is proving to be difficult, needless to say. In his mind, an essay is a pasted-together document of sections of text written about a subject (usually found on Wikipedia). He cuts and pastes a paragraph at a time, until he has cut and pasted six paragraphs, clicks save, and triumphantly announces that he is finished with his essay.

After I explained to him the concept of plagiarism, and he got mad because his easy essay-writing method had been thwarted, I decided that we should back up a bit and focus first on paragraph writing. I had him watch an educational video about horses and had him write a one-paragraph summary. I had told him that the paragraph needed to have 5-7 sentences, but he claimed that if he combined two sentences that they should still count as two sentences. So his paragraph consisted of two compound sentences and one concluding sentence. Below is his paragraph, written in his own words, titled “The Horse.”

The first horse came to be 5.5 million years ago, but had 3 toes on each hind leg and 4 toes on each front leg. As time passed, the forests turned into grasslands and the horse lost all but one toe on each leg and those turned into hooves. The reason why a horse wins the Kentucky Derby is because it is just following it’s gut instinct.

Aside from that apostrophe, the paragraph is grammatically correct. But what impresses me the most is the complex idea that he takes as a given: a horse’s “gut instinct.” What is a horse’s gut instinct? Running? Feeling its hooves hit the ground? Trying to find its toes? I like the fact that his writing makes me contemplate different ideas. It also gives me a little insight as to how his mind works, and that is something I value and enjoy.

Setbacks

I suppose this is what it means to be the parent of an autistic teen. I start thinking Wow, he’s been doing really well lately, functioning, talking, responding well to the medication, being more independent. This is great! And then Blam! The phone rings, or I go to pick him up from somewhere, and someone starts to tell me that it’s really not great, that there have been problems. And then I get that brick in my gut and go into apology mode and why me? mode and I just wonder how much more I can take of this.

I went to pick Nigel up yesterday afternoon after the Scout camping trip he had been on. It was Friday night, Saturday all day, Saturday night, and they came home Sunday morning. He’s done so much with his troop that I figured he’d be fine for two nights and one full day. It had been hot there, and he didn’t just withdraw, he got mean. He complained endlessly, he told his patient Scoutmaster that he wouldn’t help clean or do any of his duties unless he would be taken home. He made everyone miserable and acted inappropriately.

I think the problem is that he just doesn’t realize when his behavior is inappropriate. He can’t regulate himself very well. The autism makes him think of himself and so he doesn’t sensor his reaction to things. He doesn’t care what anyone thinks of his whining and complaining, or care that a 13-year-old shouldn’t act that way.

And so I try to tell him. Again. And again. But I think what will do me the most good is to realize that this is how it is. Just because he’s doing well for a few weeks unfortunately does not mean that we’re in the clear. I need to accept that there will always be setbacks. I try not to think of my apprehension about his behavior as he gets older. He wants to attend the local public high school in a little over a year. He wants to go to college. All I can do is hope that he will continue to mature, to develop. We’ll cross those bridges when we come to them.

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.