Currently viewing the tag: "autism"
January was a lot like December. Positive improvement. Increase in vocabulary and language skills. Good temperament. We got his articulation test back and it put him well within average for his age. He had an IFSP where we spent most of our time remarking on his improvement from his last IFSP. We visited the developmental pediatrician who gave us our diagnosis nearly a year ago and he’s very pleased with the Bug’s progress. He made it clear that he thinks the Bug will be a happy, high-functioning kid who will require less services as he gets older. Basically, our Bug is kind of a poster child for early diagnosis and intervention.
As has been the case for a while now, there’s been lots of reflecting on how the Bug has changed. Yesterday we were looking at the little book the Bug was given when he left his playgroup in the early fall. It has lots of pictures of Graham and other kids playing. But I was struck by the pictures. They’re similar to pretty much any picture of the Bug before recently. They generally look like this:
May, 2011. Vacant (though adorable) face.
November, 2010. Vacant face.
Pretty much as soon as we hit toddler-dom, we lost the baby face and went to this zoned-out look that was pretty much all we saw for a long time.
And then there is now.
February, 2011. Action shot and a big smile.
This isn’t just a kid who’s learned to say “cheese.” This is a kid who smiles regularly. It’s nice to see.
He is still doing his typical conversational style, where he notes something and repeats it, waiting for you to say it back to him. But he’s also making more complex sentences. And you can tell all the positive reinforcement from therapy is kicking in. Here is a typical conversation we have when he wakes up in the morning.
Bug: I hear the heater. Hear the heater. I hear the heater.
Me: You hear the heater?
Bug: (in sing-song teacher voice) That’s right!
The funny thing about all this progress is it’s starting to scare me. Not that I don’t want him to do well. But we just started our IEP. And I worry that the school district will say he’s doing great, needs no services and that he won’t get into a preschool.
He is doing great. He’s also getting 25+ hours a week of therapy. (We now have therapy every morning and every afternoon, except for Thursday afternoon. It’s seriously a full-time job being the Bug.) I hear horror stories about regression and I don’t know what will happen when the Bug can only get therapy through our insurance instead of as an Early Intervention kid.
I want him to continue to do well. I want him to get weaned gradually off of the help he’s getting now. But I don’t know that that’ll happen until he’s in a more structured classroom setting like 1st grade, not so much the play of preschool.
I try not to worry too much. He hasn’t had any of the evaluations yet. There’s no point in me worrying until we get there.
We are in the early stages of working on discipline. Definitely relying on incentives and they generally seem to work. The biggest obstacle is just toddler distractedness.
One thing I’ve been paying a lot of attention to in the past couple weeks is that he’s turning back into the little perfectionist he was before therapy. Everything has to be JUST SO and if it’s not he freaks out. This doesn’t really surprise me much, knowing who his parents are, but I am trying to keep it from leading to bigger outbursts.
The other day our Early Intervention worker complimented me on calmly talking him through one of these small episodes. It was nice to be complimented. But I do feel like some of my parenting attitudes have a lot to do with therapy and a lot to do with the fact that it doesn’t matter much to Graham if I raise my voice or get upset. Back in the day, it wouldn’t matter what I said to try and calm him down so I just stopped getting upset. There was no point. Now it’s serving me pretty well as I feel pretty able to handle him calmly.
Oh, and have I mentioned he likes to count? He doesn’t always start at one, but he does pretty well when he’s in the mood. That Sesame Street is kicking in pretty fast.
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A few months ago our lead therapist was transferred off the Bug’s case and replaced by a new one. Our new therapist told us he’d seen our old one recently and the first thing she asked was, “How’s he doing with food?”
Not a surprising question. But I bet she was surprised by our new therapist’s reaction, he seemed kind of puzzled. “He’s doing great!” We’ve reached some big milestones lately and I thought we’d cover how we got here.
Eating can be an issue with any toddler, so I don’t think this is isolated to autistic kids. The kid who eats anything and then nothing is an age-old tale. (My brother only ate peanut butter sandwiches or spaghetti with clam sauce for most of his childhood.)
At 12 months the Bug was a reliable eater of solids. He ate pretty much anything, including my Mexican Casserole. He got lots of veggies, especially zucchini and carrots. And he already had his abiding love for raisins. It stayed that way for a while.
Around 17 months this changed. A lot. The Bug became a grazer.
There were two major contributors. First, the Bug became very picky and wouldn’t eat many foods he would have accepted before. I don’t know why this happened, but it did. Second, we ran into some serious communication problems.
It was around this time that I started worrying about the Bug’s communication, which ultimately led to his autism diagnosis a couple months later. The Bug began to get picky and wanted specific things to eat. But he had no way of letting me know. He wasn’t yet pointing. He wasn’t talking. He would stand at the gate to the kitchen and get more and more upset as I tried to find what he wanted.
It was brutal for both of us. I compensated by putting out little bowls of almost everything. I couldn’t give him raisins all day (which is probably what he wanted) but he had no way of understanding when I told him ” no more raisins.” For several months, much of my day consisted of ever-escalating crying and screaming from the Bug as I helplessly tried to meet his requests.
Eventually we began introducing some new foods and saw a little improvement. Cereal, crackers and frozen go-gurts became staples. But mostly we continued to work around his temper.
When therapy started, there was a heavy focus on communication. Once the groundwork was set, we focused on responding positively to his requests. If he asked for food, he got it. Sometimes he would ask for something particular. Sometimes he’d go into the kitchen and point. So he was still a grazer, eating what he wanted when he felt like it. But he was eating something and he wasn’t as upset. We took it as a win.
Around the time Graham turned 2, we focused on having him eat one or two bites of one food before he could get another food he liked better. It didn’t go too badly, but we found out from the pediatrician that Graham was underweight. I had a few explanations for this. Graham had stopped drinking whole milk and mostly requested water when summer came. Plus he would sometimes forget about eating all together when he was caught up in play. So we went back to his grazing style, though we started to incorporate more foods to try and made sure he was getting plenty to eat.
One thing I did that made a lot of the communication-focus period easier was finding foods I could feed the Bug quickly once he asked for them. Fruit was great (apples, bananas) so are the fruit/veggie pouches. Granola bars. Cereal. Cottage Cheese. Applesauce. Frozen waffles. Frozen chicken. Brown rice. Anything microwaveable had to be ready in less than a minute. It made the system a lot easier when he got his request met quickly.
As time passed, this became less urgent. I started giving him pasta, which he had to wait for while it cooked. He didn’t like waiting, but waiting was one of his programs in therapy so it was a word he understood. He started to understand the concept of getting food “hot.”
Finally we found ourselves with a Bug who was back at a healthy weight and who could request any of his foods. It took several months but now he specifies what granola bar he wants by the color wrapper. (Orange for peanut butter, purple for oatmeal raisin, etc.) He knows an orange must be peeled. He will request some foods hot.
So what was the next challenge?
Now that we’d overcome communication and made food something the Bug knew he could access, it was time to add structure.
My new attempts started last week. I was a little ambitious and decided to add 2 things at once.
First, I wanted to get vegetables back into his repertoire. Every couple months I try and fail, but this time I felt like we have the vocabulary to talk it through. I also suspected he’d eat more than he let on. Another advantage of his time in daycare this fall was that I saw what he ate every day and got good reports that he’d eat his food. I suspected he avoided new foods in part because he was at home where he knew he could get what he wanted.
Second, I wanted to institute more formal meal and snack times. Therapy is often interrupted by Graham’s requests for food, so I decided he would now have Breakfast, Lunch and Dinner. And a snack in the morning and afternoon. There are already meal time pictures for his visual schedule so it was easy to get that started.
When it’s meal time I call the meal by name. Sometimes I choose items for him, sometimes we talk about what he wants. If he’s getting a treat I let him choose it. Or if it’s a granola bar or cereal he can choose which kind. At meals I serve him two or more items and a drink. The biggest challenge right now is trying to contain mealtime within 30 minutes. He is constantly up and about.
I’m hopeful that as he gets more used to it that we will move meals to the dining room (right now he does them at the table in the living room where he does therapy). The eventual goal is to have him eat dinner with us when possible. That would be a great improvement over now, when we can never eat until the Bug’s gone to bed.
As for veggies, I started simple with green beans, peas, corn and carrots. For ease and simplicity I’m using canned for now. At our first attempt, I used green beans and the Bug eyed them warily. He ate all of his chicken but couldn’t be bothered to touch the beans. I told him he could have his “treat” (I believe it was one of his granola bars) if he ate one bean.
The Bug is quite the actor and he did a good job of picking up a bean, inspecting it, putting it down, putting a bean on a fork, moving it toward his face, putting it in his mouth, and then pulling it right back out. But eventually he ate the bean. And then he ate all the rest. As I suspected, it was all about the first step.
Since then he has requested veggies at lunch in addition to having them at dinner. We’ve been successful with all 4 veggies. Our one hiccup was when I gave him peas & carrots, which he finds disturbing for reasons I can’t discern as he likes both peas and carrots. (Perhaps he will be one of those my-foods-can’t-touch kids?)
So far it’s been a great success despite a couple bumps in the road. I’ve ordered a booster seat so Graham can sit at the dining room table (once we actually set it up…. that’s another story) and I’m planning to continue to expand his palate.
What I’d love to hear from you is how you got your picky toddlers to turn back into normal food-eating kids. In particular the Bug needs more protein in his diet and I’m curious about which meats or beans I should introduce him to and how to do it. I still rely heavily on foods that take minimal preparation and plan to keep it that way for a while so I don’t mess with a good thing. Perhaps one of those microwave-egg things? He used to eat lots of scrambled eggs but hasn’t taken to them lately.
Any tips you can share about getting your toddler to eat meals or new foods?
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So I’m a little slow getting this up, but better late than never.
The last couple months have seen plenty of progress. He is picking up words so quickly I’m having trouble keeping up. His pronunciation still leaves a lot to be desired, so there are a lot of times when I don’t understand what he’s saying. (Took me a week or so to get “cinders and ashes,” a Thomas-ism. He’s recently added “bust my buffers.” And “big surprise” sounded exactly like “jesus christ” for a really really long time. That was a tough one.) His speech therapist is going to do an articulation test next week because she agrees that he’s either lazy or behind with many of his sounds. Hopefully that’ll give us a better idea of what he’s capable of and when he’s just not bothering to make the sounds correctly.
The Bug is doing great with books. He’ll sit through them. He’ll sit through them HAPPILY. He’ll ask to read them again. Like any activity, it can’t be forced on him, but if he’s in the mood he really enjoys it.
I am most impressed lately by the progress he’s making with emotions. I know this can be an area where autistic children really struggle. Oddly, the first one he seemed to grasp was “scared.” He had a thing for the Halloween episodes of Thomas, which he called “scary train.” He also has a knack for understanding when something is meant to be scary and when it’s not. He doesn’t actually get scared, but he gets the idea.
Then came “sad.” He knows if someone has been crying they’re sad. This week if I’m struggling to get through a diaper change where he’s being uncooperative, he’ll point out “Mommy sad.” Which is pretty darn true, I have a scowl on my face.
He knows “silly” and is more than happy to oblige by acting silly at any opportunity. He laughs when he’s being silly. And he’s laughing at appropriate times, not just when he sees other people laugh.
Now we’re seeing “happy.” During a recent diaper change instead of “Mommy sad” he said “Smile, Mommy.” That was kind of a whoa-moment.
We’re working on greetings. He’s very good at saying goodbye, but not so good at saying hello. Therapists come to the house all the time so we get lots of practice. When they arrive he’s immediately running around, showing them this and that, while we keep prompting him to say “Hi, ______.” He usually does eventually. Not really seeing eye contact yet, but we can work on that.
He still talks a mile a minute. He generally repeats himself until you say whatever it is back to him.
He has taken to “No Daddy” or “No Mommy” when he doesn’t want one of us to look or come with him. We override this when necessary, but so far it hasn’t been a big deal. Apparently he doesn’t like us to look back at him when we’re in the car.
I’ve mentioned in recent posts that we’ve been doing a lot of reflecting. It was December 2010 that I first suspected Graham was autistic. And we’re just about to get Graham’s yearly Early Intervention evaluation and his yearly checkup with his Developmental Pediatrician.
It wasn’t an easy year for us, but it’s been an amazing year for Graham. He is no longer a child who may never talk. Now he is a child who will not stop talking. If you were to come to our house to meet him, it would be a minute or two before you’d get a hello, but that’s because he’s so busy telling you about everything he can think of to tell.
He’s also regularly in a good mood. How crazy is that? This fussy, high-maintenance kid will never be low-key. Just a simple request for a granola bar involves steady, distracted chatter and wandering in and out of the kitchen a few times. But he’s happy.
We’ll see how he handles our transition to a new baby, but I don’t expect him to struggle. If I’ve learned anything, it’s that this kid is adaptable.
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I am not usually the wrap-up-the-year type. But 2011 was the year this blog actually came together instead of just being a place for me to post cute pictures of the Bug for friends and family.
The blog was a huge source of comfort for me this year. It started as a safe place for me to talk about my concerns about the Bug before his diagnosis. I took my time about it. I slowly walked around the subject. I’d already been in the thick of worry for 6 weeks before I brought it up on the blog. But once I crossed that threshold it became easier and easier to talk about it. And because of the blog and Twitter I found so much support and community.
Of course, one thing I mentioned only casually on the blog at that time was just how bad I was feeling in general. Not just the autism stuff. No, we’re just talking good, old-fashioned depression. I had a rough time after Graham was born. Not the immediate PPD kind, but around 6 months things were tough. Eric was interviewing for residency, he worked long hours, the Bug seemed to get harder as he got bigger, and I was working out babysitters for my work schedule. In April 2010 or so I started seeing a psychiatrist. At least, I did until we moved in June.
By the time 2011 rolled around it was really important for me to see one again. I’d quit my job. My husband was gone almost all the time with a high-stress job. My child was developmentally delayed. I was living in a new place with no family or friends. It was not pretty.
A year later, I still have that psychiatrist. I got a job, and then left it. My husband is still gone almost all the time with a high-stress job. My child is still autistic. And we ended 2011 on a very very rough patch.
But still… my feelings about my life at the end of 2011 are so much better than they were at the end of 2010.
I know the New Year is kind of this arbitrary time we all sit and reflect. But there’s nothing wrong with reflecting. And when the last couple years have been this crazy, I think it can help. We seem to be heading upwards. And I have little reason to doubt that 2012 will be a better year than 2011. That certainly isn’t how I felt in 2010 or 2009. These last few years have been so overwhelming, so consistently full of change and trouble.
But there’s a bright forecast now. And I owe so much of that to this blog. Having this place to work things through and all of you to work them through with is invaluable. Plus I feel like I’ve been able to make this blog just what I want it to be. It’s never a burden. I never sit there thinking, “Ugh, what am I going to post?”
It’s kind of crazy how optimistic I am. I am kind of in denial about the whole new baby thing. I had a rough go last time. I have no reason to expect things to be different. Maybe it’s silly for me to feel so good about it. But I do. I guess it’s been the theme of this pregnancy. We weren’t planning another baby quite yet. Not that I wasn’t thinking about it. In fact, I wrote my post to the non-existent hypothetical baby after the actual-existing non-hypothetical baby had already been conceived. Whoops!! Just goes to show those pregnancy hormones kick in early and I had big-time baby on the brain. Still, after we recovered from our surprise at learning of the baby’s existence, we’ve been really happy and optimistic about everything.
So I guess it’s not just 2012, a baby on the way kind of stands for hope, doesn’t it? We really needed some hope this summer, halfway through the year, wondering how Graham’s therapy would go, wondering how we’d juggle two jobs and our household. But everything shifted. Our whole perspective just changed. And I feel like that change has penetrated every corner of our lives.
We started heading upward right around the time this baby announced her presence. So I feel like there’s no reason to think we won’t keep going right on up.
Of course, I wanted her to be a mellow, quiet thing. The last couple days she has kicked so hard she makes me gasp. So….. maybe not. But I’ve managed my pregnancy better (not that it’s been easier, per se, but I’m handling it better) and we have the baby girl we wanted and I am so looking forward to the 4 weeks Eric has on paternity leave to just enjoy our little family and all our visiting family.
Maybe 2012 won’t be as great as I hope it will. Maybe I will lose my mind in the craziness of having two children. Maybe I will decide that I want to go back to work, but not be able to find a job. There’s still a lot up in the air.
But I feel good.
And that’s something.
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When it comes to autism, there’s one thing I get really worked up about: early diagnosis. We were stupendously lucky to have a diagnosis at 17 months. A lot of pediatricians don’t seem to realize that’s possible. And thanks to that early diagnosis, Graham has made astonishing strides. The earlier the involvement the better, and it breaks my heart to talk to other parents of autistic children who weren’t diagnosed until they were well into childhood. Those parents wonder if they could have done more, if they should have questioned more, if it could have helped their child.
I don’t want that to keep happening. Especially since there’s research being done to find earlier and earlier symptoms of autism so parents can be aware and so they can discuss their concerns with their pediatrician. It also means they can involve Early Intervention and other helpful services earlier in the process.
All this is in my head today after seeing this article from Parenting Magazine yesterday on signs of autism in infants. They point out clear signs with specific dates, it’s one of the better lists I’ve seen. By 12 months you should be able to have a good idea if your child is going to need an evaluation with this list. It was around that time that I was starting to worry about Graham even though everyone told me it was fine. Here are the main things to look for from the article:
BY 2 TO 3 MONTHS, your baby isn’t making frequent eye contact.
BY 3 MONTHS, he isn’t smiling at you.
BY 6 MONTHS, he doesn’t laugh.
BY AROUND 8 MONTHS, he isn’t following your gaze when you look away from him.
BY 9 MONTHS, he hasn’t begun to babble.
BY 1 YEAR, he isn’t consistently turning to you when you call his name.
BY 1 YEAR, he hasn’t begun to wave bye-bye.
BY 12 TO 14 MONTHS, he hasn’t said a single word.
BY 14 MONTHS, he isn’t pointing to show interest.
BY 18 MONTHS, he doesn’t play “pretend.”
Remember, none of these are for-sure signs. They’re all developmental issues you should be looking for at your child’s milestone points. But if you see more than a couple, you definitely want to talk to your pediatrician about autism or other delays.
One thing I always have to point out is eye contact. Everyone always told me Graham made eye contact so of course he wasn’t autistic. First, eye contact is one of many factors to consider. Second, it’s decreased eye contact you’re looking for, not none. And Graham did have decreased eye contact, not that I realized it. When I play with babies now I am always surprised at how they study my face and I realize Graham didn’t do that.
That time from when Graham was 12 months until his diagnosis were some of the most difficult for me. I was struggling with my child, I felt like something was wrong with me. I guess that’s one reason this is so important to me. It’s not just to help the child involved get the best services so they’re a step ahead when they get to school-age. It’s also to help parents who can feel overwhelmed and frustrated.
I know a lot of people who worry about their friends’ or family’s kids who may show developmental delays but whose parents don’t see any problems. This kind of list can be helpful to talk about with them. (Be kind and cautious, of course. You want the best for children, but you have to allow parental control.)
And above all, if you find you have concerns and your pediatrician doesn’t seem to share them (especially if you’re seeing multiple factors indicating a potential delay) you should definitely consider seeing a different doctor to get another opinion. For us, it was the pediatrician who finally validated my concerns. Without her, who knows what would have happened and where Graham would be today.
I’m proud that one of the places that so much of this early diagnosis information comes from is our own Children’s Hospital in Boston. I suspect Tessa will be joining the same study mentioned in the article, as we’re enrolling her in the autism-sibling study as soon as she’s born.
We love research. Eric plans to make it the focus of his work. And we look forward to having Tessa in good hands so we can do whatever we can to help her should she need it.
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It was a very calm Christmas at our house. One might even venture to call it peaceful.
Eric doesn’t get this week off, so we didn’t travel. We celebrated at home by ourselves.
We didn’t have a tree. We didn’t sing carols. We didn’t have lights. But I think it was one of the best I’ve had.
On Christmas Eve I made pancakes, a rare occurrence these days. Bug and I napped in the afternoon. And I made a last little shopping trip after a spur-of-the-moment decision to do an appetizer evening for the two of us. After the Bug went to bed, we ate to our heart’s content, drank egg nog and cider, wrapped the Bug’s presents, watched Black Christmas while commenting on how dumb everyone was and how much I dislike Olivia Hussey, and played a new game we were gifted. (Thanks Andrea and Spence!)
It was a nice, calm day. And Christmas was no different. We brought the Bug downstairs and tried to interest him in his 4 wrapped presents. (He’d received others but we figured unwrapping 4 was more than enough for one day.) Once we got him interested enough to open one, he was so excited to play with it that he’d forget about the others. It took most of the morning but by the end he seemed to have the hang of it.
I chose wrapping paper with snowmen because I know he likes them. And “snowman” became his word for present. After his nap he asked for “more snowman” so I’m pretty sure he has a handle on the whole present thing now. He played with all his presents and went through every single color of Play-Doh one at a time.
Eric and the Bug were kind enough to let me watch White Christmas. Though I think the Bug enjoyed it. Perhaps he has a thing for Bing? (Don’t we all?)
He was in a great mood all weekend. Something about both Eric and I being around does that to him. Though I’ve seen an all-over turnaround lately in his moods. He’s so much more likely to laugh and play and crawl into your lap. He’s more interactive all the time.
It all got me thinking about how big the Bug is now, how much more he is like a boy than a baby. Which got me nostalgic. And led to Eric and I watching baby Bug videos after he’d gone to bed.
This was his very first Christmas. He looks so different, all big cheeks and big eyes. Then we had to trace the change of when he’d gone from his chubby baby face to his own little Grammer boy face. (End verdict: around 15 months or so, though there are glimpses before.)
And that got us looking at videos like this one. We have already started to forget where Graham was a year ago. Where he was 9 months ago. Where he was 6 months ago. We are so used to his progress that we forget how amazing it is. Like this video, from shortly after his diagnosis when he still didn’t have any real words and our astonishment over his ability to say this one thing was huge. (He lost the word just a couple days later.) I remember how excited I was about this one little thing. When I look at it now, I see how he doesn’t look at me, how he’s stimming in a way he never does anymore. It’s strange.
Shortly after taking that video, I wrote:
This video has a weird effect on me. It’s the most language-related progress we’ve seen out of the Bug in months. But less than an hour after I recorded it he wouldn’t say it anymore. He hasn’t said it since.
It’s kind of like the time he clapped for me a few times… then never did again.
That was a rough period. Knowing his diagnosis, not having started therapy yet, waiting to see if our Bug would ever be verbal, if he’d ever progress at all. Now it’s hard for me to realize that was still in the past year. It was 2011. And look at things now.
I think that Christmas evening, sitting with Eric and talking about our year and the lows we’ve faced and how happy and confident we now feel about the future, I think it was just about perfect.
Money is tight lately, so we weren’t able to give all the gifts we would’ve liked to family and friends. (New Years cards are forthcoming, though!) We also didn’t get each other gifts. We are really grateful for everything we’ve received. I have some Amazon gift cards I’m excited to use, if I can ever figure out what to get! A new cookbook. And a membership to my favorite museum once they reopen in a few weeks.
But having those hours together to talk and enjoy each other was priceless. I know it sounds cheesy, but it’s true. We don’t get a lot of quiet and peaceful time alone where we’re not exhausted or rundown or in a bad mood. Sure, I still want a DSLR camera and I have no idea when we’ll be able to afford the one I want. When I went online and saw people talking about the amazing gifts they gave and received I felt kind of like we were having our own separate holiday all by ourselves that nobody else knows about.
And I liked it.
I expect that as years pass and kids get older our Christmas will inevitably become busier and louder and filled with more presents and toys. But is it bad that I’d kind of like it to stay just like this forever?
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About Me
Jess is a procrastinator, a former working mom who is suddenly staying at home, a Dr-Dr's wife, a non-practicing lawyer, an Autism Mom, a devoted reader, a penny pincher, a coupon clipper, a new New England-er, a low-key agnostic, a nice girl, a top-notch speller, a hardcore blogger and a Twitter fiend.
The blog covers everything from coupon tips to Autism support to adorable toddler pictures to hilarious tales of my daily grind with the occasional review & giveaway thrown in for good measure.
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