December 22, 2012
Despite her cold, she was in my room at exactly 7:04 am, as she is every day. The clock by her bed lights up at 7:00, letting her know that it is okay for her to come get me. Our clocks are, it seems, four minutes apart.
Shortly after, I heard Moe stirring in his room, and Jelly wanted to come with me to wake him up. This isn't something she usually does. Moe likes to sleep in, and his home program allows him to do that. By the time Moe gets up, Jelly is dressed and eating breakfast, sometimes already off to school. Moe also likes to wake slowly, and Jelly's exuberance in the mornings can be a bit much for him.
But that morning, I let her come with me. We discovered Moe out of bed and lying on the floor, snuggled up over the heating vent. He had even brought his pillow with him and looked quite comfortable. I wasn't sure he would enjoy an invasion by his little sister.
Jelly is a little afraid of Moe these days. He has pulled her hair a couple of times. This is not an act of anger or aggression, but comes from overexcitement mixed with a lack of impulse control and understanding as to how to interact with this increasingly interesting little person. But Jelly doesn't quite understand that yet, and it doesn't make it hurt any less. So when Moe is agitated or running a little wild in the house, she gets frightened.
I decided, then, to let Jelly go to Moe. She laid down next to him, sharing his pillow. She crawled under a portion of the blanket. I positioned myself near them, ready to intervene if necessary, but held back. Jelly held out her hand to him. "Give me five, Moe!" she said gently. He did. She giggled and held out her hand again. He touched it briefly, palm to palm. They did this several times, back and forth. Sometimes he initiated by raising his hand to her, and other times, Moe would give me his hand. I gave him the palm squeezes and scratches I know he likes when he first wakes up. But Jelly would inevitably raise her hand again, and Moe would respond.
I have spent many hours pondering how best to forge a relationship between Moe and Jelly. But they seem to be doing this all on their own. Jelly watches Moe's ABA sessions, and can run programs. She listens to how we talk with Moe and does the same. She is insistent on giving him things that he likes. One time they dumped out a big bucket of farm animal toys and she handed them to him, one by one, and he put them back in the bucket. Though a simple exchange, the enjoyed the interaction, and Jeff and I loved watching it. She (and this is my favorite) always asks "Do you need any help?" when I'm changing Moe's diaper.
I can guide, but this is their relationship to build. They are each other's.
December 18, 2012
|Best Chocolate Chip Cookies|
Enjoy and if you have one, please leave your favorite cookie recipe (or two) in the comments!
Best Chocolate Chip Cookies (from America's Test Kitchen)
Brown Sugar cookies (from America's Test Kitchen)
Peanut Butter Sandwich Cookies (Martha Stewart)
Chocolate-Dipped Coconut Macaroons (Sunset Magazine)
Seven Layer Bars (From the sweetened condensed milk can)
Oatmeal Butterscotch(from The Buttercup Bake Shop Cookbook)
|Peanut Butter Sandwich Cookies|
- Preheat oven to 350 degrees.
- Lightly grease two or three 12 x 18 inch baking sheets (Note: I like to use the silpat for these.)
- In a medium bowl, whisk together the flour, baking soda and salt. Set aside.
- In a large bowl, cream the butter with the sugars until fluffy, about 2-3 minutes. Add the eggs, one at a time, and mix well. Add the vanilla. Add in the flour mixture and beat thoroughly. Stir in the oats and the chips until well incorporated.
- Drop by rounded teaspoonfuls onto the prepared cooking sheets, leaving several inches between for expansion. Bake for 10-12 minutes or until lightly golden. Cool cookies on sheets for a minute, then remove to a rack to cool completely.
Peanut Butter SurprisesFrom Martha Stewart. Makes about 2 Dozen. These are best eaten fresh from the oven, when the chocolate center is still warm.
1 1/2 cups all purpose flour
1 tsp baking soda
1/4 tsp salt
1/2 cup (1 stick) unsalted butter, room temperature
1 cup packed light brown sugar
1 large egg
1 tsp pure vanilla extract
1 cup smooth peanut butter
1 cup roughly chopped, roasted, salted peanuts, plus 48 halves for pressing into tops
10 ounces semisweet chocolate, cut into 1-inch chunks
- Combine flour, baking soda, and salt in a medium bowl and set aside. In the bowl of an electric mixer fitted with the paddle attachment, cream butter and sugar on medium speed until light and fluffy. Add egg and vanilla; beat until well combined. Add peanut butter and beat until combined.
- Add the flour mixture all at once, and beat on low speed until just combined. Add the peanuts; beat until combined. Wrap dough in plastic wrap, and chill in refrigerator at least 2 hours.
- Preheat oven to 350 degrees. Line two baking sheets with parchment paper. Pinch off about 2 Tbsp of dough, and make a well in your hand with the dough. Place one chunk of chocolate in the center, and enclose with the dough to cover completely. Roll dough into about a 1 3/4 inch ball with your hands.
- Place the ball of dough on the baking sheet; repeat with the reamining dough and chocolate, placing cookies about 2 inches apart. Press 2 peanut halves into the top of each cookie.
- Bake until cookies are golden, 16-18 minutes, rotating the pans halfway through. Remove from oven; transfer to wire rack to cool slightly.
December 17, 2012
First and foremost, autism is not mental illness. Autism is a developmental disorder. It is a disability that can affect many areas of development, including communication and social skills, as well as sensory processing and regulation. Some people with autism also have cognitive or intellectual disabilities, others have average or above average intelligence.
Autism is also a spectrum disorder, which means that each individual is affected differently. You may hear the terms "low functioning" and "high functioning" although those are not especially descriptive or accurate. Some people may, for example, be unable to speak and have severe anxiety but are quite eloquent writers and fully independent. Others may be verbal and able to tolerate noises and crowds but lack the executive functioning skills to live independently. This is a gross oversimplification meant only to illustrate that autistics are a diverse group that share some aspects of a diagnosis.
So what about autism and aggression? Generally, and certainly in Moe's case, aggression is a form of communication. It is sometimes an impulsive reaction to an external stimulus that might bother him, such as the dog barking, or an internal feeling of emotional dis-regulation. Primarily, however, because Moe cannot speak, it is a way for him to express frustration in a moment. He is telling us something, whether it is that he doesn't want to sit in circle time anymore, isn't feeling well, doesn't want his diaper changed, or just wants to be left alone. We are working hard to help him communicate those needs in other ways, but it is sometimes frustrating for him when we aren't getting what he's telling us.
Sometimes, Moe will do something that appears aggressive but isn't intended to be. For example, a few minutes ago, he got very excited and was running around a little wildly. He ran up to his little sister Jelly and pulled her hair. This was not intended to hurt her - it was just an impulse. He was smiling and giggling and didn't know how else to interact. Moe might bite because the deep pressure is a way to calm himself down when he's over stimulated or upset. We have done a pretty good job of teaching him to bite a chewy toy instead of a person or himself.
What Moe's aggression isn't, however, is pre-meditated. It is purely in the moment, usually easily mitigated when we are paying attention to what he is telling us, or at least redirected to something more appropriate. He can, for example, crash his body onto a large pillow, but not onto the dog.
Could someone with autism perform a pre-meditated act of violence? Of course. Autistic people may have other forms of mental illness or can be otherwise driven to violence in the same way that a neurotypical person could, though people with autism and other disabilities are much more likely to be victims of violence.
November 30, 2012
That, however, was more about labeling items than about following directions. Moe continues to have trouble pointing to things in books, though again, whether this is an issue of understanding, attention, visual processing or just plain "I don't want to" is hard to tell. But what I do know is that Moe is following directions more than ever before.
It started slowly, and was very context sensitive, often requiring a gestural cue or sign to accompany the instruction. If Moe was in the bath, for example, I could ask him to "let the water out of the tub" and point to the drain. He would then let the water out. I could point to his shoes or touch them, and tell him "take off shoes," and he would do it, or at least try. With more repetition, we could fade the gestural cue.
But now, it is clear he understands the language from the start. We've been working with Moe on some simple tasks, asking him to do things like "touch nose, show me your head, where's your knee, etc." This isn't just about teaching Moe body parts, although that is part of it. It is about helping him learn to listen, to discriminate the words we are saying, and follow through on the words he is hearing. It seems to be making a difference.
He can understand more complex instructions too. If we're in the kitchen, and Moe asks for something to eat by pointing at it, I can say, "Okay. Go to the table," and he'll leave the kitchen and go sit down at his spot at the table. I can say "It's time for bath," and he'll sign bath and go right to the bathroom door. He knows what it means to clean up, give an object to someone, drop or pick something up, etc. Some of these are things we explicitly taught, and some are not.
Moe still requires a lot of contextual cues, especially with new instructions, but don't we all to some extent? Sometimes it seems Moe still may not be able to physically put the pieces together to follow through on an instruction, although that is happening less and less. And of course there are times he doesn't want to do what we're asking. He is a five year old kid, after all. But there is a qualitative difference in his understanding of language.
This isn't about teaching Moe to just be "compliant." There are some things you need your kids to do (come here, clean up your toys, get dressed) and of course there are safety issues as well. For a kid that puts everything in his mouth "drop it!" and "spit it out!" are pretty important. And one of the newest directions we've been working on is "stop!" He's learning so quickly these days that with just one teaching session, he knew what stop meant. It took his school a year to get to that point, and then only in very specific circumstances. Now we're working on "stop" in different environments, with him walking toward and away from us, and Moe is doing it with a flourish. He always makes sure to stomp his feet just a bit when he stops. I think he's making sure we noticed.
This is third in the series of things Moe can do. For the others, click here
November 25, 2012
But the weekend was tough. Wednesday night both kids were up several times during the night. I went to bed at eleven. Jelly was up at one in the morning, asking me to wipe her runny nose. At three, a picture fell off the wall, scaring the crap out of us and making a loud racket that woke both kids. Moe was up from four to well almost six. He finally fell back asleep but of course Jelly was up and wandered into our room by seven-thirty. The rest of the weekend went much the same way.
We were all sleep deprived and short-tempered, unable to manage Jelly's whining and Moe's behaviors, which escalated quite a bit this weekend. He was about as disregulated as I've ever seen him, thrown off by lack of sleep but also the arrival of grandparents and four days without any therapy sessions. We were fortunate enough to have good weather, and spent quite a bit of time outside so he could run and climb. But when indoors, Moe still wanted to climb all the time. We rescued him several times from the top of the mantle, once from the high shelf at the top of his closet, and once sitting on top of the refrigerator. Even with extensive child-proofing, he requires more and more vigilance and it is exhausting.
This year, we declined dinner at my BFF's house because I thought it would be easier. And so, though our small thanksgiving was lovely, and it was easier, it also felt a little lonely. I don't know if anyone else felt this. Perhaps my emotion was colored by Moe's difficulties, or memories of my brother whose birthday was just three days prior.
Thanksgiving used to be one of my favorite holidays. I have so many memories of eating with aunts and uncles, talking and enjoying so much laughter around the table. We'd often play a game afterward, and always ended with several pies: pumpkin and/or sweet potato, homemade apple, and always chocolate pie, my brother's favorite. When I first had Moe, I imagined these traditions continuing, and his first Thanksgiving was at Grandma and Grandpa's house. I can picture what this could be like now - the kids running off to play after dessert while the adults drink coffee and laugh some more.
I know I am supposed to reset my expectations. I know that it isn't fair to carry my expectations of a perfect holiday, if such a thing exists, to my family now. We are no longer the same people. And I try. I try really hard. I try to enjoy the time together, remind myself that disappointment is only in the comparison, not in the thing itself. But most regular days, I struggle against the feeling that this isn't the life I planned for. The holidays make that so much more apparent.
November 15, 2012
I wanted dark wood.
The walls were light green with white wainscoting and I thought dark wood furniture would make the room feel more grounded. Modern. Just right for my baby boy.
A couple years later, dark finishes would be everywhere, but at the time blond wood was the fashion. I found a crib with an espresso finish, but couldn't find a dresser that was just right: big enough and not too tall so it could double as a changing table.
We found an unfinished dresser. The dresser, in itself, was nothing special. Pine. Simple. But the work we put into it was the very definition of a labor of love.
Jeff stained it to match the crib. I added jungle animal drawer knobs, lined the bottom with shelf paper and filled the drawers with baby clothes.
The top right drawer held diapers. Socks in the middle drawer. Jammies on the left.
As Moe grew, the contents evolved. The bottom drawer had to give up its blankets to make room for shorts and swimsuits. Jeans and t-shirts replaced onesies.
Other things changed. Chewies and sensory items, stretchy vests and a bright green body sock found their home in the top left drawer. Some things stayed the same. Diapers, replaced by pull-ups but diapers nonetheless, remained in the top right drawer.
Last weekend, we had to donate the dresser. Moe had been sleeping in a bed tent, and after a year or so of being climbed on, one of the poles broke. The tents are on back order and we needed a change. So we took down the tent, and to keep Moe safe we took all the other furniture too. The toy chest went to his sister's room. The swing and his little work table can be relocated every night. But there was no place to put the dresser. It had to go.
The next day I had another donation to make, this time of outgrown clothes that I had collected emptying the drawers. I drove back to Goodwill, and I couldn't help myself. I went inside.
And there it sat. My dresser. I tightened the drawer knob that always came loose. I knew it was just a thing. But that thing had seen us through a journey. A journey that began with hopes and dreams and the cutest little baby you've ever seen. And just as those hopes and dreams have had to be adjusted since Moe's (still the cutest boy you've ever seen) diagnosis, some practical things have had to be adjusted too.
|Waiting to be purchased|
Even so, I cried on the way home.
Originally posted at Hopeful Parents, where I contribute on the 14th of every month
October 31, 2012
Imitation is one of the fundamental building blocks for learning. Typical children imitate their parents when they play. They imitate other kids to learn social interaction. They imitate speech sounds to learn to speak, and often will closely watch the way a speaker's mouth moves so they can move the same way.
For this reason, many ABA programs including our own spend a lot of time on developing imitation skills. And not long ago something "clicked" for Moe. He is now able to imitiate physical actions. In fact, his go to response right now if he's unsure of what you are asking him to do, is to imitate you.
We are excited about this development! It shows that skills, like imitation, that come to many children naturally can be taught. I have no doubt that Moe had to reach some level of brain development to get here as well, but this skill certainly has come only since we started working the one on one home program with him this summer. He imitates play with toys like dolls, farm animals and cars, as well as gross and fine motor movements.
Surprisingly, Moe's fine motor imitation is much more accurate than his gross motor. A request to put his arms up may not make it all the way over his head, for example. This is likely do to motor planning and proprioceptive difficulties (understanding where his body is in space). Moe is able to distinguish one arm versus two arm actions and sometimes will even discriminate left and right (though we aren't asking him to do this specifically).
This is still done in a highly directed environment. I do not think Moe always understands why or what he is imitating, but he knows he should do it and is motivated to do so. If imitation truly is the foundation for other learning, it gives me hope that he will learn more advanced and abstract skills as well, though certainly in his own time. In particular, basic imitation is a foundation for learning to speak, and indeed Moe is trying to imitate some speech, though his apraxia (difficulties with motor planning) does get in the way.
This is one of the reasons our ABA provider is so insistent on making sure Moe makes eye contact before we fulfill a request. It isn't that we want Moe to be able to look us in the eye for social purposes, but rather that we hope conditioning facial awareness will help him imitate the motor movements for speech.
I know a lot of this conditioning type of ABA can be controversial among autistics themselves. Even words like "conditioning" can make people bristle. Moe seems to do well with this repetitive type of learning, but it certainly may not be for everyone. Let me also be clear that this is not about trying to get Moe to act "normal" or otherwise hide his autism. It is about helping him gain the skills he needs to be able to learn.
I would be interested in hearing from autistic people themselves if they have thoughts on teaching imitation to teach learning other skills. Is imitation something you work on? Or do you learn in a completely different way?
This is the second in the series about the new skills Moe has gained. Click for the first piece, Play iPad.
October 29, 2012
By Friday, it is clear that Moe needs a break and I do look forward to having Jeff around, but the lack of structure on the weekends does not work well for Moe. He gets bored, but also has trouble occupying his time. He doesn't want to be engaged in an activity, and even when I can get him to sit down and do some puzzles or Mr. Potato Head, it's for all of about 2 minutes. The iPad can keep him occupied for maybe 15 minutes before he starts to overload.
Frankly we are at a loss as to what to do with him. Outings are exhausting, though we try as much as possible. Yesterday we went to a pumpkin patch. Jeff spent 45 minutes chasing Moe around, resting only when Moe stopped to play in the straw. At one point I found some pumpkins that were very bumpy and Moe sat and played with that for approximately 37 seconds. I tried to pose the kids for a picture during that time, at which point Moe grabbed and scratched Jelly's arm, and that was the end of that.
So we took a drive up to another town about 15 minutes away and stopped at my favorite of the 30 or so bubble tea places within a one mile radius. We all got watermelon juice and listed to Jelly complain about why Moe got to ride in the stroller and how she was "having a hard time" walking. Also, Moe pulled gum off the bottom of the table and stuck it in his mouth. I was shockingly unfazed by this.
We got home and started a bath for Moe. Jeff finished up, got him in his pull-up and let him have some down time. And by "down time" I mean time to go in his room, take off his pull-up, climb into bed and spread poop all over. Jeff put Moe in the shower where he acted like he was being water-boarded and I took care of the sheets and other cleanup in his room.
Moe, once again clean, was this time put into a pull-up and his zip up the back pajamas. Jeff and I were finishing up cleaning when we went to check on Moe, who was now in the kitchen (the gate to which is merely a suggestion at this point). He was reaching up to the counter with his hand in a tub of margarine, out of which he had clearly just eaten a large scoop. He looked like he was both about to puke and take another bite.
We turned on the TV, hoping that might keep him still for a few minutes while I made dinner. Moe sat down nicely to dinner, but I couldn't stop smelling poop. The boy still stunk. So after dinner, it was back to the bath, this time with a pretty serious scrub down. Meanwhile, I returned to his room for another round of cleaning, sprayed everything with Lysol and opened the window. Once again clean and jammied up, the boy returned to his room, where I caught him seconds later by the open window, covered in something. My heart sank as I thought it was more poop, but became overjoyed when I realized he was only playing with dust that had accumulated on the window jamb. He was kind of covered in this stuff, but at that point I decided it wasn't anything a baby wipe couldn't handle.
Besides, by that time I'm pretty sure we were out of hot water.
October 24, 2012
But there is one feeling that I didn't expect, and I seem to feel it a lot: Outrage.
I am outraged at the abuse disabled people suffer at the hands of people who are supposed to be caring for them.
I am outraged at the lack of services and support our kids get in school.
I am outraged at the callous use of the word "retard" by people who should know better.
I am outraged when adults with autism tell me I don't care for my child the right way.
I am outraged when parents of autistic children don't listen to adults with autism.
I am outraged when a parent doesn't vaccinate their child, or spreads lies about vaccine safety.
I am outraged when two loving people cannot get married because they are of the same gender.
The list goes on. And I have to stop and wonder - is all this outrage good for me? Is it good for anyone? Fueled by caffeine and righteousness, the internet is full of so much outrage. It's exhausting.
The statements above are all things I believe. I believe them strongly. They are valid and important concerns. But outrage on the internet is just the daily state of being and has lost its power. We can't possibly yell loud enough to be heard anymore, and I can feel my blood pressure rising over - over what? A political pundit out for ratings? The insults of a troll who is only looking for attention? The real issues, the human beings, get lost in all the noise.
There has to be a better way.
October 22, 2012
I know she is using the word "retard" to get attention. But enough is enough.
Ann, using that word doesn't make you funny. It doesn't make you look smart. It doesn't make a point about anyone or anything (other than maybe your own lack of class). It certainly doesn't make a point about Obama (the supposed "retard" in this scenario). A comment like this doesn't count as political commentary. If school yard name calling is the best you can do for an argument against the president, then I'm feeling pretty confident about this election.
It does make you look ignorant and mean.
That "retard" you mention is a human being. He's a person deserving of the respect and kindness due to all people. Yes, Ann, even to people like you who feel the need to insult others just to make themselves feel better.
Because, Ann, when you call someone a retard, you aren't insulting the president. You are insulting this boy.
October 15, 2012
We initially had Moe in a center-based program, then realized he needed something different and moved to an in-home program. I regretted those few months we "wasted" at the school. When Moe turned three, we moved him to the preschool special day class. After two years, we decided not to send him back. I regretted not doing it sooner.
But there really isn't anyway to know before you try. Some things work for some kids and not others. Some therapies, like ABA, vary widely in approach, with some kids responding best to concrete discreet trial applications and others doing better with more naturalistic styles. It may take a while to find a therapist or provider who fits your family's style and needs.
Sometimes programs, or therapies or medications may work for a while then need to be adjusted. All people grow and change and our kids are no different. What worked at one time may no longer be appropriate. It takes time to get to know your child, and he will continue to change. I have to remind myself that trial and error time is not time wasted; it is the necessary process to figuring out what works.
We've tried a lot of therapies with Moe. Especially when he was younger, he really loved singing, so we tried music therapy. It was okay, but for us, it wasn't The Thing. We will keep trying. There are more things: aquatic therapy, equine therapy, recreation therapy, listening therapy. We will try some of them (especially ones that sound fun for Moe) and pass on others. I may regret time wasted and money spent on some, and wonder about others we decide not to do. But each thing we try is a lesson learned.
Moe did so well in an intensive, one on one, in-home program this summer. This ABA team uses very discreet learning, with the use of traditional reinforcers like food or iPad time. Moe seems to work well with this concrete style of teaching and I thought, "why didn't we do this sooner?" I had to remind myself that when Moe was two he had an in-home program and he needed more naturalistic reinforcers at that time. Moe changed, and we adapted his program. It will likely happy again and again.
At the beginning of this school year, we put Moe in a school that uses more of a group-based approach and it didn't work. We understand this now, and as we look for a new school placement I have a better idea of where he is likely to succeed. Do I regret the month he spent at the school? A little. But we had to go through the experience to figure it out.
Fortunately, we are getting to know Moe's style of learning better and getting faster at recognizing when he isn't succeeding. And he is getting better at telling us when he's unhappy - even if it is through behavior rather than words.
As we prepare to start working with an AAC specialist, I am hopeful that we will find the right communication system or device that will help him communicate. Part of me is already kicking myself for not starting sooner, but we had to wait until he was ready. Moe seems to be ready now, and I am looking forward to seeing what he can do. I have high hopes that we will find the right thing quickly, but I am sure there will plenty of trial and error here as well.
October 9, 2012
But Jeff and I have been marveling lately at the number of things that Moe can do and ways that he's progressed over the past several months. So I want to spend some time telling you the ways in which Moe is developing and changing. I think it will be good for me too.
So today, I launch the first in a series of posts called: What Moe Can Do!
Moe can play iPad games
Every mother's dream, right? For me, in many ways, yes. For a long time, Moe would take the iPad and just push the button over and over. He would tap an icon to start an app, and basically just randomly touch things or watch the opening sequence then press the button again. And he would drag his whole hand on the screen so that he'd often inadvertently leave an app. He would be easily frustrated or over stimulated.
|Moe does well when the iPad is at an angle. |
The OtterBox case is great for this and for protection.
So why am I so excited about this? In part, it is because it is a concrete way to see progress. I can see more sophisticated thinking going on as he becomes better able to work within the apps. It gives me hope that he may be able to navigate a complex communication system in the future.
But most significant right now is that Moe finally has an activity he can do on his own. He is not good at occupying his time. He will spend his free time bored or frustrated and gets into trouble. He wanders the house, climbs things, bounces off the walls, spins in his swing or empties Jelly's drawers (her hair accessories are way more interesting than anything in his room). The iPad provides activities that Moe can do independently. They require focus, problem solving skills and creativity. I try to balance iPad time with generous amounts of physical activity, but just having Moe sit still for a little while is a huge improvement for both of us.
In case you are looking for some apps for your little one, here are some of Moe's favorites right now. Jelly likes these too, though some are not quite challenging enough for her anymore.
-All Toca Boca apps, especially Toca Band (both kids' favorite right now), Toca Doctor, Toca Kitchen and Toca Robot Lab
-Several of the Duck Duck Moose apps, especially Itsy Bitsy Spider
Over the next few days, I will update my Resources page to include a list of apps we like, but if you are looking for an excellent curated list, visit the spreadsheet over at Squidalicious.
October 2, 2012
But I am lucky. I have not lost one single friend or family member since Moe's diagnosis. In fact, I have some really great friends who have shown how great they really are. They make an effort to connect. They understand that I have to say no more often than not and continue to invite me anyway. They ask me about Moe and his school and they care about my answers. And when I don't want to talk about autism anymore, we talk about other things.
I'd like to say that this is because I am the most interesting woman in the world, and that they are just happy to have whatever time with me they can. But really it is a testimony to them. To their openness and intelligence and all around loveliness. And I got to spend last weekend with several of them in one of the most beautiful places in the world.
They are also funny as hell. And they catch me when I run to them.
September 27, 2012
Anyway, Jim posted on Target's facebook page a few weeks ago about the cashier he had at his local store. You can read the post, but the gist is that the cashier likely was autistic, and that Target was awesome for hiring him because they recognized that someone who might be a little socially atypical could still do a great job. And this post went all kinds of viral (it's up to about 820,000 likes), and was written up all over the place.
My local Safeway grocery store always employs several people with disabilities. This is a Good Thing. This past summer, there was a young man with a cognitive disability who worked as a bagger. Since I generally went during the weekdays when it wasn't crowded, he was often the only bagger working so I saw him a lot.
This young man was friendly and polite and definitely not good at his job.
It pains me to say it. But he just wasn't a skilled bagger. He was very, very slow. He would fill the bags too light and with no sense of organization. He would stop and comment on silly things in the cart, like the Tasmanian Devil on some juice boxes, and if I had one of the kids with me he would spend a lot of time interacting with them (not always entirely appropriately) instead of bagging. The cashiers were kind and helpful to him, but they also ended up bagging most of the groceries.
And I somewhat shamefully admit that I would, especially if my own developmentally disabled child was with me, avoid his line or use self check-out instead.
This feels me with great cognitive dissonance.
I applaud Safeway for hiring disabled people and I want them to continue this. And if that person needs a little extra time to do his job, it should be no big deal for me or anyone to spend a couple extra minutes in line. Let's be honest, I was just going to waste that time on Facebook anyway.
But sometimes a person just isn't cut out for a particular job. I bet there is a job this young man would be very good at, but it wasn't this one. And I don't know that we do anyone a great service by allowing him to remain in a job that he isn't successful at.
I'm new to the issues of disability rights. In part, it seems, it must be about showing people that a disabled person can do just as good a job as someone without a disability, reducing outright discrimination. But it is more than that, isn't it? Maybe it also means that we also have a responsibility to find meaningful ways for people to interact in the world even if they aren't especially adept at it. I don't know and I don't know where the line is between the two.
I don't see this man at the store any more. I don't know if he was let go. Perhaps he was in a job rotation and his time at Safeway simply concluded. Or maybe his supervisors helped him find work that was more suited to his skills. Whatever the case, I wish him well.
September 21, 2012
I don't know if Moe has SPD. I'm sure if you asked our Occupational Therapist, she would say unequivocally yes. If you ask our ABA Director, he might deny such a thing exists. And herein lies the challenge.
Moe is a sensory seeker. He loves to play with water and have his back rubbed and feet squeezed. He is calmed by swinging and gets riled up by spinning. He will occasionally do things like pull the grass and watch it fall very closely to his eyes. Everything goes in his mouth. He likes stronger flavors than most kids his age (spicy or sour) and seems to have a fairly high pain tolerance. As I write this, he is screaming, not out of any or frustration, but because it is a new "stim," or so it seems from the outside.
But how do we know he has a processing disorder? We do know he has severe language impairments. Without language to process the world, what is left but the senses? Moe can touch and taste and explore with his body. It is what he understands. He cannot connect to others with conversation, but when someone rubs his feet, that feels good and he likes to keep that going. That seems perfectly reasonable to me, not like a disorder at all, in fact.
Moe does have some sensory sensitivities, especially to the dog barking and to the sound of his little sister crying. His sensitivities are not extreme in that he can recover from them fairly quickly when the noise stops, but he is clearly bothered by those sounds quite a bit. I am too. Those two in particular make it very hard for me to concentrate. If the dog is barking, I find I absolutely cannot continue a conversation I'm having. I don't go running from the room, but I am also older and able to regulate my reactions better. Now I don't know if Moe and I fundamentally process sounds differently, but it is hard to diagnose a disorder based on hating two of the most annoying sounds known to man.
I mentioned the word "regulation." This is something Moe has quite a bit of trouble with. He can get very excited very quickly, and sensory input is often helpful in calming him down. A lot of what we do in OT is related to these regulation and calming strategies. Moe can also be quite impulsive. But again, without language or the sense that there socially acceptable ways to behave and not behave, and no way to ask for things beyond the few gestures and sounds he has, the line between sensory processing and behavior becomes blurred.
And this brings me to something I've come to learn about Moe, and about why so many of the techniques we've tried in the past with him may not have been successful. It is very easy to attribute Moe's behaviors, like grabbing, pulling, and biting, to "sensory needs." In his classroom, they would give him things like weighted vests, fidget toys, and chewies when he was acting out, especially during activities like circle time. And sometimes those things helped and sometimes they didn't. And when Moe used a "replacement behavior" like chewing on a pillow instead of a person, they claimed success and moved on. But they weren't addressing the fundamental issue.
How do I know that? Because it didn't stop the behaviors. In fact, it may have increased them. Imagine if you were trying to tell someone that you didn't like circle time, or didn't understand what was expected of you, and they stuck a heavy blanket on you. You might, for a moment, think, "this blanket is really comfortable." But then you'd realize that you are still in circle time and you still don't understand what you are supposed to be doing. And then you would be even more frustrated.
Sometimes, it seems Moe is unable to control his actions. He lashes out or spins wildly in his hammock swing or screeches, and I think he can't help himself. But by working this summer with some talented behaviorists, I've learned that he can. For example, Moe will often get aggressive when getting ready for bed. I could believe that when he is over-tired, he cannot regulate his system, and the deep pressure input he gets when he grabs me is his way to try to calm down. Or I could believe that he doesn't want to go to bed, and is acting out because that is his only way to communicate a pretty complex need. Or maybe the truth is somewhere in the middle. He's overtired, feeling cranky, and is hitting because he wants me to know that he doesn't like how he's feeling.
What I do know is that with the right motivation, Moe is able to control his response. If, for example, I let him have his iPod while I'm changing his diaper, he is calm. It is not just that the iPod gives him a place to focus. He will be acting out, and I can say "do you want phone? Show me nice hands." He will immediately calm. I can then say "please lay down." He will lay down immediately. I hand him the phone and we get through the diaper change quickly and easily.
I am not denying that Moe has trouble regulating his emotional response. I don't deny that he is a sensory seeker or that sometimes he gets so frustrated or overstimulated that a sensory approach is the right way to help him calm down. But we, as well as many who have worked with Moe in the past, have probably downplayed or misunderstood the behavioral component to his actions. We used what our ABA director called "explanatory fictions," applying a sensory approach to a behavioral situation, and as Moe gets older and his needs are becoming more complex, as he is asked to do more and has more reason to try to get out of completing taks, we are figuring out better ways to both motivate appropriate behaviors and attempt to extinguish inappropriate (aggressive) ones.
September 17, 2012
This summer, we had Moe in a 30 hour a week in-home ABA program. I agreed because it seemed like a way to jump start his learning after two years of being enrolled in a preschool program with very little progress. And it was only ten weeks. At the end, I said I would never do that again.
And now, just three weeks later, I am doing it again.
It has been a hard three weeks that has affected all of us. Moe had a rough transition back to school. Behaviors that I had hoped would taper off after returning to a regular schedule escalated. We drove 50 miles a day to school and back, and each day on pickup, the report was the same: "Moe had a rough day." We added a dedicated aide. We adjusted Moe's daily schedule. We hoped it was just a transition period.
And this weekend, we made a decision. We took Moe out of school.
Of course, we consulted with a few people first. Jeff and I observed the class. And we could see that despite some really positive aspects, it was not going to suit his needs. They weren't set up for him. He was unhappy, in Moe's perfect storm of both bored and over-stimulated. And Jeff and I, through our research on schools last year, through the ups and downs and assessments and evaluations and so very many therapies (and therapists) have gotten good at knowing what is working for Moe and what isn't. Moe may simply not be ready for a classroom environment.
Moe had a good summer with his in-home ABA program. So for now, we are going to continue with this. As the end of summer approached, we considered whether we wanted to continue on or send Moe back to school. We thought the program would be a good complement to an afternoon ABA program. And even though Moe wasn't able to weigh in on the decision beforehand, his behavior told us he wasn't happy there. And we decided to listen to him.
I am nervous. It means I am, for the third time, going to be with Moe almost all of the time. He can be challenging, and I get the brunt of his frustration and aggression. Part of me thinks that if he is not ready for a classroom environment, isn't that exactly where he needs to be? How else will he get ready? But he really learns better at home in that one on one environment. He does great with repetition, and discreet trial type learning (though I know this isn't for everyone). And Jelly is the perfect typical peer for him, willing and eager to participate.
This time, it is different. There is no end time, no number of weeks or birthday that will mean back to school. But that also means no deadline. We will do this as long as it is working for Moe and go back to the drawing board researching schools for when he's ready.
This is the Right Thing, even if it is also the Hard Thing. But once again, I am left wondering if there will ever be a place in this world for Moe.
September 14, 2012
September 7, 2012
Frankly, I haven't seen Moe on a good day in several weeks.
Moe has been aggressive lately, with increasing frequency and intensity. He scratches, bites and screams. His outbursts are brief and seem to come out of nowhere. Sometimes they are clearly frustration induced, so we need to get him a way to communicate with us. He is still so heavily prompt depended for communicating his needs. We have started the process for an intensive AAC evaluation at his new school.
Moe's behaviors have necessitated the need for a one on one aide for him at school. I was hopeful that this would help keep some consistency between his home and school programs, and help mitigate the aggressive behaviors. Yesterday was her first day with Moe. He bit her. She made sure to tell me that she had to get a tetanus shot and is on antibiotics. Of course I feel terrible. But isn't that why she's there in the first place?
I had hoped that being back in school and on a regular schedule would help. And Moe has been sleeping better, at least. But he is still lashing out at home. We are on edge whenever he is around. Jelly is afraid of him, flinching or moving away whenever he comes close. It breaks my heart, but I know it is partially my fault. I tell her "give Moe some space." I am afraid to take him anywhere. I wonder if medication would help, but I don't think we're there yet. I think Moe has learned that these behaviors get him something, and we need to figure out how to turn that around.
I feel at a loss over how to parent my boy. I am in over my head and am running out of places to turn. I am constantly on the edge of tears, and that is not helpful for anyone. Our ABA team is helpful and I want them to move in with us, but I don't think insurance would pay for that. So instead I am working on finding someone who has specific experience with aggression in non-verbal kids. That may or may not be someone from our current ABA provider. I really want Moe to be a success story, but right now I feel like we're failing him.
August 29, 2012
We got off to a bit of a rocky start, in part I think because of an email I sent to his new teachers last week letting them know that Moe has been exhibiting some impulsive and aggressive behaviors. After a horrific Friday during which Moe had a major tantrum at Jelly's school that resulted in a little boy losing several strands of hair, and me bleeding and in tears, I felt I had to tell them so they could be aware.
The upshot is that they want Moe to have 1:1 support in the classroom. And while I wish they had told me this before school started, since it is now much harder to find a good person with availability, I think this will be good for everyone. We will, ideally, find someone from our current ABA team, which will allow some consistency between school and home.
After meeting with the preschool director yesterday, I felt much better. She observed him in the classroom and agreed with the teacher's assessment that he needs 1:1 support, at least for a while. But most important, she seemed to really believe in his abilities. She said "he's ready," for this class, and most importantly, to get started in earnest on an AAC (alternative and augmentative communication) program.
Although Moe has been exposed to several AAC methods, including sign language and picture/icon exchange systems, it has never been in a systematic way. He hasn't much seemed to "get it" and our prior AAC evaluation didn't reveal much. We also knew that the way our programs were set up, we would not be able to provide the consistency that Moe requires to learn, especially an entirely new way of interacting.
But Moe now seems to be a real communicator, is trying to speak, but with only a few sounds in his arsenal, it will be a long time before his ability will match his desire to be understood. He will have an AAC evaluation at his new school. One fantastic thing about this school, as opposed to the public program Moe was in before, is that they have an AAC specialist on staff, who pushes into the classroom twice a week. We will set up some 1:1 sessions as well, and I cannot wait to get started on helping open up the world to Moe and decrease his frustration (and I hope reduce the aggression).
The down side is that Moe has quite a packed schedule, with school in the morning, speech two days a week, OT once a week, and ABA every afternoon, some days until 6:30. With the addition of extra speech with the AAC specialist, I think we will need to make some adjustments. I am a firm believer that downtime is important too.
I am faring quite well in this whole thing. Since Moe's school is only 3 hours, and I didn't want to drive back and forth from home, I joined a really lovely "sports resort" in viewing distance from the school. It is a gym, but also has spa, cafe, wifi, and several lovely pools. It is a great place to unwind, work, exercise and actually shower every day! I have my first personal training session tomorrow. I have never worked with a trainer before and I am not sure what to expect. More on that later, I'm sure.
August 20, 2012
There are a couple of families in the neighborhood with developmentally disabled kids. The girl, who is maybe twelve or thirteen, often has vocal tics or stims, possibly Tourette's. She yelps and shrieks as she walks by (not an unfamiliar sound, though different from Moe's). The boy, who is probably around 18, usually holds a child's toy when he walks. I think it might be a radio. I don't know them, have never exchanged more than a passing nod, as they walk around the neighborhood. They all seem happy enough, or at least content, but I can't help but notice how old the parents look. They look so very tired, like they haven't slept in years. They look like my future. I wonder, when we stroll by, if they look at me and see their past.
Earlier this summer, I was invited to the graduation ceremony for Moe's playgroup. Moe hasn't done much with that group since he was two, though I'm still friends with several of the women. The ceremony was a way to celebrate the kids moving on to kindergarten, graduating from babyhood into their school years. The invitation tore me to shreds. I knew we couldn't go. Moe wouldn't sit still for a ceremony. He wouldn't understand why we were there, wouldn't behave appropriately. And I didn't want to see him there, surrounded by typical kids, the only one not full of words and readiness to take on this new chapter. These children were all babies together; Moe used to be just like them. But didn't he deserve to go? Didn't he make it through five years just like the rest of them? On his own path, different in so many ways, but here nonetheless. Didn't I deserve, maybe more than anybody, to say "I survived. Am surviving?"
We didn't go.
Today is the first day of school in this area. My Facebook feed is full of first day of kindergarten pictures. Friends with kids I've known since they were babies, since Moe was a baby. I didn't expect heartbreak today, didn't prepare for the crushing emotion. Today, I am having a hard time breathing, having trouble finding solace in the small crumbs of progress Moe throws me occasionally. I don't begrudge anyone these pictures. I posted my own "first day" picture as Jelly returned to preschool. And I will take a photo of Moe next week, when he starts his new school. I am hopeful about this year, anxious to get started. But it isn't the same. We are different. He is different. And there is always something there to remind me.
August 14, 2012
But Moe also has another laugh. To the untrained ear, this laugh sounds a lot like the first laugh. But trust me, it is different. This is the manic laugh, the one that escalates, the one that starts and does not stop. This laugh is not in response to a game or a joke, but comes from inside, from a place I do not understand. This laugh is a warning.
It is a warning that Moe is overstimulated. It is a warning that he is not able to control his impulses. It is a warning that he won't be sleeping any time soon, that I need to be on high alert because he is going to grab the dog or pull Jelly's hair. And he better not need a diaper change because it might be nearly impossible to accomplish.
Sometimes Moe wakes up laughing like this, and I know it is going to be a rough day. As parents, we innately want to hear our kids' laughter. In those earliest sleep deprived days, we are propelled forward by our baby's first smile. And just when we wonder how we will make it through another spit-up covered day, we hear our child's first laugh, and are energized once again.
But if ABA has taught me anything, it is that we humans are, as all animals, creatures of behavior and conditioning. And though the power of motherhood is strong, we cannot deny our Pavlovian dispositions. And my life, turned upside down in a myriad of ways, is one in which my son's laughter fills me with dread. I hear Moe laugh and my heart sinks.
It is an unnatural position, an uncomfortable contortion of emotion.
I suppose I am lucky. Moe doesn't have tantrums. He survives trips to Target and is able to eat at a restaurant largely without incident. He rarely cries. If, on a trip to the grocery store, Moe begins to giggle wildly, the stares will largely be of the "aww, isn't he cute" kind, rather than the "I wish she'd control her kid" kind. Not that it matters what anyone else thinks, but I'll take what I can get.
I cannot tell if Moe is happy when he's giggling wildly. I suspect not, that he doesn't enjoy that his mind and body are out of control, or at least I suspect they are. Sometimes he calms down by finding a quiet space, in a closet or reading a book in his room. Though sometimes he seems to try to make the feeling continue, spinning wildly or running back and forth. I imagine it is like a drug, that high feeling, one he wants to continue. And all I can do is try to help him come down gently, and not get hurt in the process.
A mother, trying to stop her son from laughing.
August 9, 2012
I imagine some game creators sitting up on high, planning my demise.
"Let's discuss our latest contestant, from the Silicon Valley sector. We've thrown a lot at her. She lost her only sibling to brain cancer, and yet she still managed to get married and have kids. She seemed happy."
"I know, let's make her kid autistic."
"Already did that. What else you got?"
"Okay, well, it's not enough that he doesn't talk. He's also a runner. She'll have to watch him every second he's awake. And speaking of that, he also doesn't sleep. He'll often be manic at three in the morning."
"She's still standing. Okay, let's throw some behaviors in. Now he pulls hair. And bites. Sometimes he'll attack her completely out of nowhere. And sometimes he'll grab the dog. She's already flinching every time the kid moves around the house."
"You'll love this one. I just gave her dog cancer. Skin cancer, you know, so the dog will need to have surgery and have an enormous incision right on her hip - the exact spot the boy likes to grab. This should be fun to watch."
"Oh! And those stitches, they are prone to popping open on dogs who run and jump. So she'll need to always make sure to keep -- ohmygod I'm laughing so hard I don't think I can even get the words out -- the dog calm. At all times! Who wants to bet on when she starts taking the dog's Prozac?"
Note: This is just a tongue in cheek piece meant to illustrate how chaotic things are right now. It is not meant to offend and I promise I am not going to take the dog's meds. Yet.
August 2, 2012
After I graduated from business school and moved back to California, I bought my first new car: a 2000 yellow New Beetle. It had a manual transmission, and though I had driven a stick shift for several years, the new car felt different. The clutch was stiffer, and had that German push-down to get into reverse thing. It took me several minutes to get out of the dealer parking lot.
When speaking with my uncle about the new car, he told me "Don't worry. Soon it will feel like an old friend."
It's like this with all big transitions, isn't it? Anxiety builds as changes approach, but soon enough, what is new becomes the status quo.
We are just two and a half weeks away from the start of the new school year. I am nervous about the new school, about how Moe and I will respond to the long drive each morning, about being so far from Jelly's school, about hiring help to care for her. Our days will once again be turned upside down but I know, soon enough, it will all be routine.
July 29, 2012
We have demanded a lot from Moe this summer in his home-based ABA program. For the first time, he is in a truly individualized program, one that meets the definition of "intensive." He's doing well, but also telling us his limits. He's learning not just skills that he should have been learning in school, but learning compliance as well. They are spending time cleaning up "junky behavior" (like grabbing everything) and keeping him focused. Moe needs to know that when he has work to do, he has to do it - or let us know that he needs a break. He always has an out, but that escape cannot be with bad or aggressive behavior.
Moe is doing great. He has a fantastic team who believes in him. Last week one commented that they can't believe Moe's rate of learning. This is especially interesting since the school district has tried to make the case that Moe's lack of progress is due to his slower rate of learning. It just shows how important it is to find the right program and the right teachers.
Unfortunately, with the change in routine, Moe's sleep demons have returned. This seems to happen with each major change in routine as, I believe, Moe processes the changes. The combination of his difficulty falling asleep, accompanied by night wakings, takes its toll on the entire family. We are trying to find the right combination of dose and timing of melatonin and behavioral approaches to helping him fall asleep and stay asleep.
Moe spent some time testing us with escape behaviors and aggression, but I'm learning some techniques to deal with it, and Moe is learning quickly that he gets what he wants by being calm and asking nicely (which in his case is any communicative attempt with eye contact), and not by acting out. This last week was good, though, and although the weekend ended with a bit of hyper, manic behavior (he is still Moe after all), he seems to be finding some regulation again.
We are only three weeks from the new school year, which brings with it big changes for us. Moe will be going to a new school, and I suspect there will be a bit of a transition once again. The school is a good 30 miles away, so we will be commuting as well, and I am more than a little anxious about how we are all going to handle it. I've had long commutes before, and they are taxing. But this was the only program we found that seemed appropriate for Moe, so we do what needs to be done.
Looming over us, of course, is the fight we are in with the school district, a fight that has been placed temporarily on hold as the teachers and administrators are now on their summer break. This has given us some time to regroup and focus on what is important, which is of course, what is best for Moe.
July 18, 2012
But there is another ball. Sometimes this ball is so small, has so little weight, it flies away. We might not even realize we don't have it any more. That ball is marked "self."
This speaker suggested one way to take some time for ourselves is through small luxuries. For example, she suggested taking an extra five minutes in the shower and, most importantly, to acknowledge that time as a special treat. I had a few immediate thoughts at this.
1. That's not very environmentally friendly. Aren't we in a water crisis?
2. I am lucky to get a shower every day, let alone one with extra minutes tacked on.
3. I have eczema. I'm not supposed to take long showers.
Even so, she was clearly on to something. My bathroom is filled with lotions and bath products that smell wonderful and look pretty and that I can only use once or twice before itchy red patches start to appear in the crooks of my elbows and the backs of my knees. But I can't help myself.
I don't generally do product reviews on this blog (though I would happily tout my favorite chewy tube or zip-up-the-back pajamas). But when I got the opportunity to try a new body wash from Dove®, a brand I can generally safely use, I couldn't say no.
|The bottle even looks nice with |
our new bathroom tile
And because I was reviewing a product, I had to take a shower every day. And with this body wash, I even felt safe tacking on a couple of extra minutes. You know what? It was actually kind of nice.
What do you do to find some "me time?"
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July 16, 2012
You lied, or maybe you just don't know any better. Either way, you all echoed those carefully crafted words so that you would have them on record. But none of that changes anything.
You have failed my son. And now it is time to move on.
I know you want to be able to help him. I wanted the same. I put my trust and faith in you. I gave you my son. I put his future, his entire life, in your hands. And it wasn't enough. For two years you had your chance.
At first I didn't blame you. But then we looked a little harder. We witnessed it all. We could see it wasn't right. I'm sorry--wasn't "appropriate." I can use the right words too, you know.
And we have seen what he can do when it is.
We have wasted too much time already.
It is a shame. I know many of you have the best intentions. You took the job because you wanted to help. You probably didn't know about all the bureaucracy. How you would be discouraged to do the right things. I can only imagine it. Who was it who told you "don't offer anything unless the parents ask for it first?" Who told you to find a way to show progress even when there isn't much to show? To blame him rather than take responsibility?
And now my son's education has come down to a financial decision. To legal bickering.
Do not forget there is a little boy involved.
Do not forget the time you sat around a table and made promises you knew you couldn't keep.
Do not forget the face of a child whose mother will not fail him. Even if the system did.
It's a shame.
July 10, 2012
But every night, when I sit down to write about it, I can't. Sometimes there seems to be too much to say. I cannot sum up. Other times, I am so exhausted I can barely keep a thought in my head, let alone write a coherent sentence.
But often, when I sit down to write, I have one crystal clear thought.
How are we supposed to keep doing this?
Moe, despite the language gain that I wrote about, continues to be aggressive, impulsive, and often completely out of control wild. It is beyond frustrating. Moe didn't have any ABA this afternoon, and in the course of a couple of hourse he broke a clock, took his diaper off several times, pooped in his swing, grabbed the dog, and swiped my glasses off at least three times. We had some fun water play outside, but he also spent a lot of time out there climbing the air conditioner and pulling handfuls of dirt out of my plants.
In other words, the same things he does every day.
I don't know how to teach him that these things are not okay. Time outs don't work. Redirecting doesn't work. I try to keep him engaged and he scratches or tries to bite me. Nothing seems to work to curb the behaviors for more than a few minutes. I don't like to yell at him but sometimes it seems it is all I can do. It doesn't help anyway.
I was so over his behavior that around 3:30 I put both kids in the car and just drove around for a while. Moe seemed relaxed and Jelly fell asleep. It was the only break I had all day.
I should take it day by day. But the voice I hear just keeps asking "how much longer is it going to be like this?"
I can deal with different. I can deal with delayed. We used to talk about getting Moe "back on track." No more. This kid is so far off track that we don't even know where the rails are anymore. That's okay.
But the aggression. Impulsiveness. Lack of sleep. Breaking things. Ripping books. Grabbing at anything in sight. Always afraid the next time is going to be the time Berkeley has enough and bites Moe. Always on alert. Always looking for triggers. Always interrupting Jelly to check on Moe.
July 2, 2012
That harsher voice sounded like the Moe we had been living with: aggressive, moody, out of control. I forgot the other voice--the other boy--existed.
And then, a little over a week ago, I was eating chips and he really wanted one. Moe had been getting better with physical imitation and signing, so we had been working with him on signing "I want" then pointing to a desired item, rather than just whining and grabbing. But for some reason, I thought back to my Pivotal Response Treatment (PRT) training. I held the chip up and said "chip?" Moe pointed. He grabbed and signed every sign he knew. I held his hands down and said "chip?"
And then Moe said "p."
It was just a "p" sound, but it was clearly an attempt at vocalizing his need. They were really good lime tortilla chips and we did this over and over and over. Again and again, Moe tried to say "chip."
After that, something happened. Moe is now requesting things with his voice very consistently. He still signs sometimes, and his behaviorists always want him to give eye contact even if he speaks, but he will almost always go to his voice first. He consistently says "up," "apple" and "phone." We've also gotten "open," "all done," and "more." Sometimes we get the beginning of a word and sometimes the end, and everything else gets some variation on "ba," the sound he makes most easily.
The words are all about Moe's needs and I can't exactly say Moe is talking. These are all approximations. But he is trying. He spontaneously comes to me and taps me to get my attention, and then makes a sound. I understand when Moe wants something and isn't just unhappy. Moe understands when we are trying to get him to say something. He often can't form the word or sound, but he knows what he is supposed to do.
It is a small step but it feels like a barrier has been broken.
June 27, 2012
A few days ago, I woke to the news that a business school classmate of mine passed away from lymphoma. He was not a friend of mine, though I always liked him. I wish I had known him better.
Later that day I got an email from my best friend in business school. He stayed in New York while I moved back to California and we drifted apart. It has been many years since I've seen him and it was nice to hear from him. I often wish I had stayed in New York for a few years after graduation. I don't think that opportunity will present itself again.
Last week, I had dinner with a group of my closest college friends. We were all dorm-mates our freshman year and remained close through college and beyond. But since we moved on from college, both literally and figuratively, we don't see each other much, at least not as a group. This was the second time we've gotten together and it was great.
But both times we've met, I've left feeling a little sad. Maybe wistful is a better word. I miss the closeness we had, although it comes back quickly. And of course we reminisce. I can't help but think of relationships past, and some that never came to be.
Part of this wistfulness has to do with having a chance to get back to myself for a while. We meet without our kids and spouses and it reminds me how different life is now. Being Moe's mom, or maybe just motherhood in general, has changed me and I often feel like I've lost some of myself. Perhaps this is just the normal cycle of life. Perhaps it is growth.
I am not unhappy now though my life certainly doesn't look anything like the one I had imagined in my twenties. A child with special needs. A career on hold. Even though I am the same person, sometimes I look back on choices I've made and wonder "what was I thinking?" But the truth is, I made the choices that made sense to me at the time, and that is all anyone can do.
This post is inspired by Getting Married and Other Mistakes by Barbara Slate. This graphic novel offers a raw, yet humorous look at what happens to Jo after a surprise divorce. Join From Left to Write on Thursday, June 28 as we discuss Getting Married and Other Mistakes by Barbara Slate. I received a review copy of the book and all opinions are my own.