Tag Archives: Development

Steps

Neil, age sixteen, calmly noticing that there is only enough milk for one bowl of cereal:  “I’ll just have toast this morning.”

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At the age of six, after he had spent three years in an intensive ABA-based program, Neil started Kindergarten in a contained (non-mainstreamed) classroom through STEPS, Specialized Training in Education Program Service. It was a two-year program, and he did so well after the first year that I made a huge mistake, one I still regret: I tried mainstreaming him before he was ready. The results were disastrous, and fortunately we were able to have him go back into the STEPS classroom after several agonizing weeks of the regular. He seamlessly returned to STEPS and finished out his second year, making even more developmental strides.

Almost ten years have passed, and I’ve never forgotten the STEPS classroom and how beneficial it was for Neil. But to be honest, usually it’s the acronym that I think of on a regular basis. It’s a reminder of the nature of development where autism is concerned – sometimes it’s one step forward, two steps back. Sometimes it just seems to be a whole series of steps back. And sometimes there are those blessed days when it’s one forward step after another.

Aside from some grouchiness due to Daylight Savings Time and some minor growling about having to do household chores, Neil has, behaviorally and socially, been doing incredibly well. He still attends his social skills class every other week, and that helps a lot. But the fact is – he’s self-regulating just as well as he did when he was on medication. It took some adjustment time, but these days, he continues to out-do himself.

For instance, when we were planning his recent birthday sleepover with two friends, he thought that it would be fun to carve pumpkins with them, and I thought it best to prepare him by mentioning that no one should be obligated to carve the pumpkins if they didn’t want to. Neil’s calm response (in his typical flat voice): “I most certainly recognize that.” (!) Additionally, at this point he has nearly mastered the art of the Unprompted Thank You, less than a year after his first one. And one morning last week, as he was going out to the shed to get his bike to ride to school (a feat that, even after a year, I never take for granted), on his own he remembered his helmet when I kissed him goodbye and said, “I love you. Ride safely.” Usually I notice when he occasionally forgets his helmet. I don’t know which shocked me more – that I didn’t notice, or that when I said ride safely, he realized that he had forgotten his helmet and went to put it on. But that – amazing as it was – was nothing compared to the thing with the toast.

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Adam, my creature of extreme habit, my fourteen-year-old limited eater, always has cereal and milk for breakfast. It’s the only dairy he will consume. If we’ve run out of milk on grocery day, he refuses to have anything else for breakfast, and I can’t stand the thought of him going hungry. In the mornings, Neil usually gets to the kitchen first to pour his own bowl of cereal and milk. Then Adam staggers in and does the same thing. Once in a while, Neil, on autopilot, uses up the last of the milk before Adam gets out there. I’m sure it was never a conscious decision on Neil’s part not to save any for Adam. So, knowing that Neil also likes toast for breakfast, I made a suggestion one morning when there had only been one serving of milk in the carton and Neil had consumed it.  “Since Adam doesn’t like toast, maybe in the future if you notice that there’s only enough milk for one person, you could save it for him, and you could have toast.” Neil negligibly nodded; morning tends to be his least verbal time. I figured that, at best, he might remember to save the milk after I had reminded him at least twenty more times (and no, I’m not exaggerating). I certainly didn’t in my wildest dreams think that two weeks later, after my mentioning it only once to him, that on his own he would pour his bowl of cereal, go get the milk, notice by the carton’s weight that it only had one serving left in it, and calmly, empathetically announce, “I’ll just have toast this morning,” saving the milk for his brother.

But that’s just what he did. He took another (big) step forward. And my heart swelled with emotion for my son, this wonderful soul who has never stopped trying.

Ed. note: Veterans Day has always been an important day to our family, and Neil and I will be continuing his tradition again this year. If you hadn’t read it last year (or would like to again), I’d be honored if you would read my post about Neil’s tribute to veterans. It’s one of my favorite stories about my son – and the veterans he looks up to.

Ninth Grade: A Review

I had this great idea many years ago. At the end of every school year, I would write a review of how that year was for my two sons, a separate entry for each, describing not only their progress but also their personality, their likes and dislikes, and things they said or did. As a writer, I figured that was the least I could do.

So, that idea lasted about two years. Life sort of got in the way, along with other writing endeavors. I had always meant to pick it back up again but never did. Then I started blogging, mostly about my children’s development, and I feel better about all those years that I didn’t write about the kids (although most of those years were documented in IEP paperwork). Their development is described in detail in over four hundred blog posts. I no longer feel like I should write about them individually once a year, because I write about them all year long.

But this year was a milestone year with Neil starting high school and making some incredible social gains, and now that we’ve reached the end of the first year, I thought I’d recap the highlights:

September: Neil advocated for himself for the first time at an IEP meeting and learned to safely and responsibly ride his bike to and from school independently.

October: Neil turned 15 and wrote a guest post. Also, he and I had a difficult discussion about not learning to drive yet, he successfully used his cell phone for the first time when he had a problem with his bike, and he revealed that, after many years of self-loathing, he is learning to accept his autism.

November: Neil, for the first time ever, joined a sports team, and my heart soared at his achievement. In other news, he prepared and drank a pizza smoothie.

December: Neil’s language skills took a step back (or sideways) with some lengthy delayed echolalia, and then dramatically forward with the most amazing conversation I’ve ever had with him.

January: Neil (with Adam) took his first solo flight! A mere week later, I overheard his first unprompted thank you! However, the month ended on a sad note due to his needing to quit the wrestling team for unfair reasons, but he handled it with the utmost maturity.

February: Neil attended his first high school dance, but he still exhibited some heartbreaking social vulnerability.

March: Neil and I watched the movie Adam together and had a great discussion about it, and Neil found his niche in his theater class, where he made some truly wonderful new friends. I got to meet some of them when Neil attended his first play and I accompanied him, where I witnessed a beautiful spontaneous hug.

April: Neil started shaving! And I experienced the wonderful novelty of enjoying myself in a restaurant with my sons and having a stranger compliment me on their behavior for the first time ever.

May: Neil went off of his medication and has been doing an amazing job overall of self-regulating difficult emotions and managing his behavior. He also achieved the rank of Star Scout after six years of Scouting.

June: Neil had a major seizure, his first.

As you can probably gather, Neil’s growth this year has been tremendous. When I look back to his earlier years, still not functionally verbal at age five with extreme sensory and behavioral issues, I can’t believe all that he has accomplished. This year alone blows me away. It’s been a lot of work, with a great deal of assistance in various forms, but he has continued to learn and to succeed on his own terms, as I knew he would. I know there will be future struggles; he still requires constant assistance academically and will continue to need help with social issues. But we’ll take it on. My son gives me so much hope that I can’t wait to see what the next school year will bring. I know it won’t be easy (none of it has been), but ultimately, it will be good.

Neil, age 11, being a tiki at Pu’uhonua National Historical Park, Hawaii, 2006

If I Blogged 5 Years Ago

Yesterday, on my way home after picking up the boys from the 700-Mile Kid Swap, I thought about what it was like when we first started doing it seven years ago. I thought about how Aidan used to throw up in the car at least every hour and how Nigel, newly verbal and still figuring out syntax and pronouns, would ask, “Why you throw up?” So I thought I’d do a follow up to my previous post on this topic.

If I blogged five years ago, Nigel would have been nine and Aidan would have been seven. I would have written about how hectic it was to have two children having IEPs with one parent to attend them (and trying to find childcare beforehand). I would write about how Nigel, who had taught himself to read at age three, before he could talk, was now reading at a middle school level and could comprehend 90% of it. Conversely, I would write about how Aidan still couldn’t read, even though I’d read to him every single night of his life and had tried to teach him for years, and so I had him in a special reading program at his school in addition to his speech therapy.

Five years ago, I would have blogged about emerging Nigelisms like this:

The Scene: Interior suburban family home. Two young brothers are seated at the dinner table while their mother serves them their plates of food. For the first time, the children are having full-size turkey burgers, as opposed to their usual half-size, so their mother placed them on buns instead of regular bread, as she had previously done. Due to their limited acceptance of foods, she wonders if they will refuse the buns.

Younger brother, about age 5: Mom, what is this fred?

Mother: It’s a bun.

Younger brother: There are bun freds?

Older brother, about age 7: Not ‘freds.’ BREADS. Not an F, a B.

Nigel, as soon as he learned to talk, loved to correct Aidan, who had pronunciation issues. But one thing that surprised me a little was that Nigel seemed to want me to correct him (Nigel). If he misused a pronoun, I would gently correct him, and then he would repeat what he’d said and insert the correction, as if memorizing it. It took about four years for him to learn to use pronouns, articles, prepositions, word order, and verb tenses correctly. He put so much effort into learning to talk. It always touched me how receptive he was to my gentle corrections. It was always the same – he would quietly repeat what he’d said and insert the correction, then move on. This happened several times a day for a period of about four years. Having studied French for several years while in school, I recognized the process of learning a foreign language. And that was how Nigel learned to speak English – like it was a foreign language.

If I blogged five years ago, I would write about how I ventured back into the realm of grocery stores and the occasional restaurant with Nigel. Salon haircuts were possible for the first time with ear plugs. He was finally starting to filter out all the sounds that had been unbearable to him before. It was liberating for both of us. I would also write about my first published magazine article, “Autism on the Rise,” which was featured in a regional parenting magazine. I would sadly and angrily blog about the first time I heard Nigel being called a retard, and how I ran outside and yelled at the boy who said it.

Five years ago, I would write about Nigel’s incredible third grade teacher, the man who happily volunteered to take on a newly mainstreamed autistic boy, one who had struggled notably the previous school year, even with a full-time aide. Mr. Incredible welcomed Nigel, provided the structure he needed, patiently included him and encouraged his other students to do the same. He made Nigel feel so comfortable that, for the first time ever (away from home), Nigel removed the snug-fitting hood of his jacket when Mr. Incredible suggested it to him in the classroom one afternoon, after six months in his class. And Mr. Incredible was just as excited about it as I was. He still, five years later, inquires about how Nigel is doing.

Incidentally, Mr. Incredible was also Aidan’s third grade teacher. By the end of that year, Aidan was reading. And now, just three years later, he’s reading at a high school level. Five years ago, I would have never thought that would be possible. That and so many other amazing things. New issues have certainly come up in the past five years – bullying, homeschooling, behavioral problems, medication, etc. – but the fact is that both of my boys continue to improve. Hope abounds.

If I Blogged 10 Years Ago

I confess. When it comes to blogging, I do a lot of lurking, especially when I first discover someone’s blog. I feel like I need to get a sense of the person before I reach out. But I also lurk because sometimes, like when I’m reading about someone who’s just beginning their journey with their autistic child, I become lost in my memories. It’s been nearly twelve years since I began my journey, when Nigel was two and a half and I thought, Hmm. He’s not talking. He often doesn’t react when people talk to him. He can’t seem to interact with peers. Autism was the farthest thing from my mind. The child development books I owned barely mentioned the A word. “Autistic children do not show emotion or affection,” they said. “They live in their own world.” That told me nothing.

Thus began a process of referrals and testing and ultimately a diagnosis that, at the time (1997), confounded me. I went back to Barnes & Noble and found a copy of the DSM IV (first edition), looked up autism, and realized that it was quite different than what I had thought it to be. And I knew then that my son had it. No question. He fit all of the criteria. Every single one. I put the book back on the shelf and went full throttle into his intensive ABA-based therapy. It was certainly gentler than full-on Lovaas (Nigel’s program did not use aversives), but the frequency at the center combined with the home visits proved to be effective and beneficial. Nigel improved, but he did not “recover.” I slowly realized that was not going to happen.

And so, if I had blogged ten years ago, when Nigel was four and a half, I would have written on a daily basis about things very different than what I write now. There would be no Boy Scouts, no Nigelisms. No posts about how well he now does in grocery stores. Ten years ago I would have written about the veritable riots he had in grocery stores, malls, restaurants, while having his hair cut (even at home), and going to the doctor’s office. I would write about how he shrieked and writhed on the floor when I had to take him into public restrooms. How he wailed if anyone even walked past the door where the vacuum cleaner was kept. I would write about how fearful he was of hearing tests, even though I held him on my lap the entire time he screamed, and his traumatic lead testing experience. I would write about my frustration explaining to friends and relatives why he did the things he did. I would write about my joy if I found a helpful autism book, because there were so few then. I would write about Nigel’s rampant echolalia at age four and a half, how he often tried to use memorized lines from movies and fit them within the context of the real situation. I would write about his hyperlexia, teaching himself to read at age three and a half, before he could talk. I would write about how he greeted visiting relatives by reciting their license plate numbers instead of saying hello. I would write about PECS cards, visual schedules, home visits, and the dedicated therapists who tirelessly worked with him. There would be talk of the precursor to IEPs, the IFSP (Individualized Family Service Plan) meetings, which we attended every few months.  

If I blogged ten years ago, I would mention my fears that two-and-a-half-year-old Aidan also had autism. He exhibited the same extreme sensory issues as Nigel, and also had a significant language delay. But Aidan made eye contact. He didn’t line up the Hot Wheels cars along the back of the couch and tilt his head while staring at them, as Nigel did. I figured maybe Aidan had a touch of PDD, but I could see the difference between my boys. Even so, some of Aidan’s sensory issues turned out to be worse than Nigel’s, particularly his oral defensiveness and proprioception. I enrolled him in the same center where Nigel received his therapy, and Aidan received some OT and speech. (He was in speech until he was almost ten, and also had an IEP until then.)

Ten years ago, I would write about just trying to get through the day. At that point, I couldn’t even think about the future. I couldn’t imagine what my boys would be like at twelve and fourteen. I was just so preoccupied with helping them to be as comfortable as possible in this world. And trying to keep my sanity because I was so isolated.

And so, when I read those blogs written by parents of children much younger than mine, I don’t want to come off as a know-it-all when I say this, but I say it with true empathy and understanding: I know what you’re going through. I’m there with you. I remember it all. You will get through it and your child will improve. He or she may not be able to do what Nigel or others can do now, but in many ways he or she will progress. Your child will not be the same ten years from now. And neither will you. (And I mean that in a good way!)

I Heart Echolalia

practice

I’ve seen some great posts on echolalia around the blogosphere lately. One point in particular that I keep thinking about was from Maddy’s post, in which she mentioned that someone had found her blog by searching “methods to stop echolalia.” Yes, it can be annoying sometimes, and maybe completely random, but hey! Your child is talking. Do you get it? Why would you want to stop that?

I have written about Nigel’s language development through various stages of echolalia. Yes, there have been times in recent years when I have prompted him to use his own words instead of a memorized phrase to communicate, but that’s because I know that he now has the ability to do that, to use his own words. Echolalia is comforting to him, however, and he reverts to that in high-stress situations. And in those situations, it’s more important to help him to calm down than to stop the echolalia. I don’t tell him “You can use your own words” when he’s on the verge of a meltdown. But sometimes, when he’s calm and comfortable, I encourage him to rephrase whatever he’s saying. I’ll gently suggest, “You don’t need to say things from videos right now. Try to tell me in your own words.” And he does now, because he’s able to. But I would never want to take that part of him away completely. He’s said some really funny things because of his delayed echolalia (scripting)! It’s how he learned to talk, and for that reason, I’m sentimental about it.

Why on earth, when a brave child is venturing into the speaking realm, would someone want to stop echolalia? Let them do it! Let them practice! When someone is learning to play the piano, there is a lot of bothersome plinking and plunking going on, usually on a daily basis. But after a long time of that, a song emerges, sometimes one that they have composed themselves. And there will still be plenty more plunking and plinking as the years go by. But also – we hope – more songs.

The Seven Year Itch

I’ve never seen The Seven Year Itch (although at some point, I’d like to). The phrase, according to Wikipedia, “refers to a disinterest in a monogamous relationship after seven years of marriage, has entered the popular culture, and has even been used by psychologists.” And now it will be used by the mother of an autistic teen, with an entirely different meaning.

As my son entered his second year of teenhood, which was just a couple of months ago, I began noticing something. Over the course of a few weeks’ worth of seemingly isolated incidents, I realized that Nigel, who had always been notorious for the eternally flat tone in his voice (except when angry), was suddenly speaking with inflection. And not just random variations – he actually put appropriate emphasis on the right words. His tone was starting to sound conversational! It took another week or two of me pointedly observing him talk and noting the increase of his inflection before I allowed myself to believe it. This is truly a developmental coup. It’s a milestone for the five-year-old boy who, when a child psychiatrist asked, could not say his own name. It’s a milestone for the boy who, for so many years, could only parrot lines from Disney movies or Scooby-Doo cartoons when he wanted to interact with people. He has worked so hard to achieve this.

I know that much of the increase in voice inflection has to do with the weekly social skills class that he is enrolled in at the local middle school this year. It’s a very small class, with only two other students, but I know that the two instructors have been specifically working with Nigel on his conversational skills. Whatever they’re doing – it’s effective. And he’s responding to it, which tells me that he’s ready. It’s time.

What do I mean by that? That’s where my seven-year-itch theory comes into play. Over the years, I have noticed that every seven years Nigel seems to make a huge leap in various areas of his development. It’s like he has this really significant itch every seven years, and when he scratches it, he hits a milestone. For example, when he was two, his sensory issues were so severe that he had to wear a fitted hooded jacket whenever we left the house to muffle sounds and help him feel secure. When he was nine, he had a wonderful regular ed teacher (he was mainstreamed that year with an aide) who not only taught him a lot academically, he patiently encouraged Nigel to remove his hood for the first time. That was also the year that I could take Nigel into grocery stores and the occasional restaurant. Another example of his seven-year-itch is in the cognitive area. When he was three, he taught himself to read, but I was told that it was common for young children with hyperlexia to not comprehend most of what they read. Seven years later, when Nigel was ten and reading at a high school level, his comprehension was tested. It was estimated that he understood about 95% of what he was reading.

When Nigel was seven, seven years ago, he really started talking. He had some speech prior to that year, but it was mostly echolalia and scripting (a term which wasn’t used much then). He would occasionally string up to four words together to communicate, but he had trouble with syntax and pronouns, verb tenses, etc. When he was seven, something clicked. He got an itch. He started stringing together more than four words spontaneously, his syntax and verb tenses began improving, and his echolalia decreased. It was remarkable. Of course, his tone was characteristically flat and downright stoic, but that was okay. It was definitely okay with me.  I figured he would always talk that way, and that was fine.

And now, seven years later, the inflection surfaces. On appropriate words, even. I am so loving this – this unexpected gift. Some seven-year-itches can be good.

Friends

Neil has a friend over today, whom I’ll call Riley. Riley has been Neil’s friend for about five years, and while Riley has several other good friends he would probably rather hang with on a Saturday, he always makes time for Neil and accepts him, autism notwithstanding.

Neil has always been a social person, which I think is what propelled him to step outside of himself and learn to talk. When he was about five and not functionally verbal, he would approach typical kids at the playground and try to engage them the only way he knew how: laughter. The problem was that the kids would think that he was laughing AT them, of course, which caused a slew of problems necessitating me to intervene. I think it was because of these unsuccessful experiments in the social realm that Neil decided if he wanted to have friends, he needed to learn to talk.

One of my favorite sites for autism information is Natural Learning Concepts, which recently posted an in-depth interview with Stephen Shore that I really enjoyed reading. Here is what he says about friendship:

It is my sense that ‘people with autism don’t want to have friends’ is a myth. What seems more accurate is that those of us on the autism spectrum have a different way of making friends.

Making a friend was a huge milestone for Neil. And learning how to keep that friend has also been a milestone. It hasn’t always been easy: over the years, Neil has had outbursts at school, including some resulting in injury to Riley, that I’m sure have caused Riley to reevaluate if it would be advantageous to continue being Neil’s friend. But Riley does and he is. His presence and his loyalty encourage Neil’s self-esteem more than anything else, I think.

God bless the Rileys of the world, and bless their parents for raising them to be such patient, understanding kids. We need a few more Rileys around.