Currently viewing the tag: "autism"
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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Lately I feel weirdly incompetent. It’s not that I don’t get anything done. I do A LOT. But pretty much everything in our household routine has been on pause due to all of the madness going on, so despite my busy-ness, I feel wanting.
This coming week should let up a little, but I am still trying to figure out how to get stuff done given our situation.
Basically, our week looks like this:
Monday: 8-11 therapy 12-3 nap
Tuesday: 8-12 therapy 12-3 nap 3-5 therapy
Wednesday: 8-12:15 therapy 12:15 – 2:30 nap 2:30-6 therapy
Thursday: 8-12 therapy 12-3 nap
Friday: 8-12:30 therapy 12:30-3 nap 3-4 therapy
Soooo yeah. Not a whole lot of time on weekdays. Bug’s bedtime is 7:30, and when we have double therapy I like to give him a light evening since he’s worked during the day.
On the days where we get off easier, like Monday and Thursday, I technically have time to do my errands. But there’s also things like doctor’s appointments to schedule and the occasional makeup therapy session. There’s also our speech therapist who we tend to schedule from one week to the next, so that varies.
Oh, and there’s also things like my stupid Braxton Hicks contractions. Currently the Bug is done with therapy in about an hour. But I’m having insane contractions that hurt like a mother so I know going to the grocery store is going to be pure torture. Especially if the Bug isn’t in the mood.
It’s when I look at this schedule that I occasionally wish I had a husband who worked normal hours. This married to a doctor stuff is no picnic. Oh, and the pregnancy bit doesn’t help. I’m usually too tired and prone to contractions after he gets home to schedule a Bug-free grocery run. Most weekends he has to work at least one day, so I try my best to get a Bug-free visit then.
Time to cook is another issue. I’m planning to spend some quality time with my crock pot because at least that way I can do a good amount of my work during therapy.
It’s not that I can’t do stuff during therapy. I really should use my time there better, with more light cleaning and cooking prep. (And more knitting. I’m still not done with my baby blanket. I need to get to work!) But therapy is prime blogging time. And I like to be there to see what Graham’s doing and keep tabs on things in general.
So far I just haven’t found a way to make this all work. (Probably because we’ve been going all over town for this and that whenever we have a free moment.) I’m hoping as things slow down I can find something remotely resembling a routine.
Or maybe I will just continue to live in this day-to-day-scraping-by mode until after the baby comes and I’m recuperated and things will be so much easier. (That was sarcasm.)
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The Poor Bug has been neglected lately. His constantly-exhausted parents are not the greatest company at the moment. I even stopped my State of the Bug posts because I am so terrible.
No, not really. I stopped the State of the Bug posts because it felt much harder to quantify the ways the Bug is progressing and where his challenges are. It was so clear-cut at the beginning but now that he’s done so well it’s much more about small and specific things.
Still, I often find myself forgetting about his progress so I want to get back in the routine. It won’t be the same as other State of the Bug posts, with clear headings, but it’ll focus on how things are going for him right now.
Before I get to his achievements, I have to give the Bug some props. This kid has done nothing but adapt to new circumstances. We moved to Boston, he got a part-time nanny, he lost the part-time nanny, he got her back, he got another one, he started therapy, he lost a nanny, he gained a nanny, his therapy schedule changed about a million times, he was tossed around and now he’s in daycare. And next week he’ll be back out of daycare. And in a couple months there will be a new baby. Lucky kid. He does have his little regressions. But he handles it all surprisingly well.
Mostly it’s me that feels guilty about all the change-ups. The Bug is a serious trooper. And it’s a reminder of how well he’s done.
It’s okay if you find this post insanely boring. But I have to keep up with how he’s doing or I fear I’ll miss it all.
He now says “apple.” This may sound silly, but it’s kind of a big deal. “Apple” was one of his earliest words but he always said “ah-chi” instead. Always. Until this week he said “apple” correctly and he’s done it that way ever since. It’s the only word he’s ever blatantly misprounced. I have no idea why the sudden change happened, but it’s a good sign. We’re working on pronunciation, since he often will say words incorrectly that involve sounds we know he can make properly.
He dances. My Bug, who has never shown much interest in music, dances. I think this is one of the blessings of daycare, where dancing is part of the day. I know there are things he’ll learn better from his peers, which is why I’m trying to find a good playgroup. Of course, his dancing is about on par with your average 12-month old and involves little more than bouncing. But he smiles. And he does it unprompted when he hears music.
He describes EVERYTHING. I can’t believe how talkative he is, even if it’s all in that mumbly toddler-speak that most people wouldn’t understand. Rewind 9 months back to last February. In his initial diagnosis, Graham’s expressive language was on par with a 3-month-old infant. He was 17 months old.
We were told by a sitter we brought in last week that he was very talkative for a 2-year-old. Recently a cashier at the grocery store took him for 3 and a half. He doesn’t have the sentences of a 3-year-old. But he is doing quite well at his own basic sentences, most of which start with “I want-”. The basic communication we strove for through the summer has been achieved. He asks for help. He says what he wants. He firmly states yes or no when offered something.
I don’t even worry that much about him stimming anymore. When he does play with his trains, he generally narrates their activities. While most of it sounds like gibberish (with the occasional “downhill” thrown in, his new favorite word) I see him actively involved with his toys instead of just staring vacantly.
I wrote recently about how the Bug now lets me sing to him when he goes to sleep. It’s gotten even better. I no longer have to ask, “Do you want me to sing?” Now when I sit with him in bed he says, “Sing.” I don’t mind the command (though we may work on a “sing, please”) because I like knowing he likes it.
He isn’t quite 100% yet on the upcoming baby. But he regularly refers to my belly as “baby.” We are introducing him to the idea of the baby having her own things, too. Our new stroller has arrived and it functions not only as a carseat frame but a regular stroller, too. He calls it the “baby stroller.” He does get to take it for test drives (both riding and pushing) but I think he may actually get that it’s not just for him.
We are making the teensiest amount of progress on the potty training front. Never fear, I have sworn never to discuss such things on the blog. But he’s never been good at these “self-care” milestones and it’s nice that he’s finally starting to move forward. We are nowhere near really working on it, but at least we’re seeing that he’ll be able to eventually.
I’ve had fantastically positive reports about daycare. He adjusted really well to his peers. (Less than a year ago he ran away from other kids.) I’ve been told he works well with the group, transitions well into activities and that he often stays in the back a bit. This doesn’t surprise me. I have little doubt he quickly gauged the alpha role of the 3-year-olds, who are quite precocious.
Every time I pick him up from daycare he is SO happy that it makes me happy. He is excited to show me things. He is excited to see me. I love that it’s been a positive experience for him and I look forward to getting him more involved with his peers.
He lets me read him a book. This is another massive milestone. He still will occasionally turn it to the last page right away, but he often lets you READ the entire book. Meaning the actual text, not just pointing at the pictures while he anxiously waits for you to turn the page.
He has not only learned his shapes but generalized them. Meaning he recognizes not only the “oval” from his puzzle but ovals he sees elsewhere in the world. We are working on colors, but it’s slow going. I’m not too worried.
In short, the last month has seen some pretty astronomical heights in terms of change and progress. I am pretty thrilled, especially since I’m about to be home with him full-time and all these changes will make him easier to handle with my massive self.
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My Life’s a Mess and That’s Okay
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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