It’s All About Communication

This post is sponsored by Cochlear, who provide families around the world with hearing-loss solutions. All opinions expressed here are mine.

Today I sat in the pediatrician’s office with Graham and saw, for the first time in a long time, his baby self. I saw that skeptical expression he always wore in those days, the distinct silhouette of his overbite, the deep focus in his eyes. I am not the type to weep over my children getting older or look back fondly on their babyhood, but for a moment I was transported to what it was like to being Graham’s mom back then. And I thought of how glad I am that I’m Graham’s mom now instead.

Babies are hard for me. Baby life is all action and reaction. There is all kinds of problem solving where you don’t actually know what the problem is. There is this little mystery of a person running your life and you’re so aware of their complete inability to exist without you.

 

There’s also the pride that comes from seeing the beauty in your child, their weight, their shape, their smile, their softness. And there’s the huge expectation, the certainty that your child is truly singular and amazing.

We all get those expectations dashed eventually, maybe not until a child goes to college, but for me it came early. And it started with a hearing test.

IMG 1133.v2 Its All About Communication
Me and Graham, shortly before his 9 month checkup

At Graham’s 9-month check-up, his babbling had decreased, he didn’t always look at people when they spoke, he didn’t respond to his name. It was time to check Graham’s hearing. We went to another doctor. I sat Graham on my lap in one small room, then another. There were several tests involving sounds and screens. I couldn’t tell what any of it meant or how Graham did. Graham’s hearing was fine. It would be several more months before we got the Autism diagnosis. When he was diagnosed at 18 months, he had the receptive language/listening skills of a newborn. That, more than anything else I learned, shocked me. All the words I’d said to him for all those months, all the comfort and tenderness and songs, it hadn’t registered to him in a way he could understand.

Those months were the hardest. The months when I knew he could hear me, but he never showed any signs of understanding me. I learned what communication really means when I had no way to do it. Graham got older, he developed more specific wants and desires, but without the ability to communicate them we were both constantly frustrated. There was a lot of shrieking (him) and crying (both of us) and it seemed like nothing would ever change.

It did change, though. The boy that I see now hardly ever gets that look on his face anymore, the one where he’s all lost in his own head. Instead he talks to me and looks at me. He knows when I’m happy or angry or sad. He tells me what he thinks about, what he learned in school, what he doesn’t know yet. And, the thing he says to me the most (besides just “Mom?”) is “I love you, Mom.” He says it all the time, out of the blue, a few times a day. There was a time when I never thought we’d get here. But here we are.

We were lucky that we found a diagnosis and found treatment. So when I talked to Cochlear, I immediately understood how important their work is. Helping infants and children (and adults!) with hearing loss is providing a way for families to communicate. You’ve probably heard of cochlear implants, like I have, and seen them help kids. This story from Natalie’s mom sounded a lot like how life changed for me when Graham started therapy.

There are still things I worry about with Graham, still so many questions about how he copes with the world. But I don’t have any doubt about his ability to hear me and understand me and there is so much comfort in that. When I talk to parents of an infant or toddler who are worried about milestones and development, I always tell them that you shouldn’t be afraid. Talk to your doctor, ask for that referral, get that test. Even if it scares you, the truth doesn’t change. What does change is what you can do about it and the help you can now find for your child.

Children as young as 12 months old can qualify for a cochlear implant. If you’re worried about hearing loss in your infant or child, talk to your pediatrician. If your child does have hearing loss, a doctor or audiologist can determine whether they’re a candidate for a cochlear implant.

Now that he’s 6, I don’t have that same experience I had when Graham was a baby where I was sure he must be better than every other baby in the world. Now he is Graham. He is himself. He tells me about Star Wars and the book he’s reading and what he learned in Science. I learn more about him every day. I am learning about his strengths and his weaknesses, his passions and his problems, and I try to remember that there was a time when none of this was a sure thing. I remember staring down a future where my son wouldn’t be able to listen to me or talk to me. It seems like another life now, with this beautiful kid in front of me. I listen to what he says, and I try to tell him what he needs to know. I try every day.

 

The Mystery of Who You Are

When your child is an infant and a toddler, you don’t know a whole lot about who they are, but at least you can describe them. Sure, that description has little to do with their personality and a lot more to do with how they sleep, what they eat, their gross and fine motor capabilities, but you can at least pin those things down. And maybe for some kids they stay that way during the terrible 3’s, but some of what makes that age so tough for me isn’t just the constant frustration of a tyrannical preschooler, but the lack of consistency. 

Tessa just turned 4 and I cannot for the life of me pin her down. Fickleness may be her most distinctive trait, to be honest.

Sure, I can nail down a few likes and dislikes. She likes accessories and riding her bike and bunnies. But you could pick out something that’s absolutely perfect for her and she’ll hate it. She doesn’t have a consistent favorite toy, what she loves today she cares about not one whit tomorrow. 

 

A photo posted by Jessica Woodbury (@jessicaesquire) on

Some of this is garden variety developmental whatever. She asks for something, then when given it 5 seconds later is now furious that you’ve given her THIS and not THAT even though this is exactly the thing she begged and pleaded for. But there is no old reliable, no go-to, nothing that I always know will cheer her up. 

This adjustment is a little hard because Graham was such a child of habit and ritual and routine. He fit into a very specific box. It’s an unusual and eccentric box, but it’s a box nonetheless. He responds well to praise. He loves a certain kind of toy. He enjoys a certain kind of game. And while these things change over the years, there is a lot of consistency from day to day and week to week. It’s comforting to know how he’s going to respond, even if I don’t always like it.

But Tessa? You’ve got me. She doesn’t respond consistently to praise or discipline. I can say for sure that she is stubborn. 

Sometimes she is vocal and opinionated. Sometimes she is content to stay in the background. Sometimes she blends in with her friends and is totally mellow. Sometimes she is bossy. Sometimes she is the little sister who repeats everything her older brother says. 

I feel like I should know more about who she is by now. I’m her mother, right?

But I’m also the kind of parent who recognizes that my kids have their own very deep and very strong inner life that hardly involves me at all. I don’t want to put pressure on her to be a certain way. I want to give her the power to define herself at her own pace. I just get impatient about who this little one is.

I’m also acutely aware of how little I know of her because I know that autism presents in very unexpected ways with girls. Our family is a prime model of this. Graham who follows a very well-worn type, and Tessa who doesn’t fit any type at all. Her therapists don’t have any more of a clue than we do, but everyone agrees that she’s generally happy, fun to be around, and quite bright. 

It’s okay if I have to keep waiting to see what her challenges will be. There are certainly worse problems we could be having, I definitely know that. For now, I still won’t know when she’ll hop happily along beside me and when she’ll refuse to stand up even though we are going to do something fun and go somewhere she wants to go and why will she not just stand up already (while Graham starts losing it in the background). For now, she still doesn’t quite have the words and the awareness to tell me how she feels or what she wants all the time, even when she is upset. 

But I do give her full props for being a master of standing her ground. Like the other night when she wouldn’t stop making noise and kicking the wall in bed. She was keeping Graham awake and making him increasingly upset, so I pulled her out of the room and had her sit in the hall for a while. Despite very lenient bargaining, she refused to stop making noise and when I let her back in she went right back to kicking the wall. So she stayed in the hall. She planted her flag in the hall. And she wanted to make sure I knew it.

 

 

She fell asleep with that scowl still on her face rather than go lay nicely in her bed. I may not enjoy dealing with that kind of stubborn but I can’t help but admire it. 

I think of all the traits I want my daughter to have…

That level of commitment and willingness to flout authority? I feel like she’ll be okay.

Transition Time

In less than a month, we’ll have a big transition. A big, wonderful transition I’ve been waiting for FOREVER. I’ve been waiting for it for so long and been so focused on the logistics that I haven’t really thought much about everything else that goes along with it.

In a month, Tessa starts school. 

Her IEP was in December and it was an exercise in anxiety. In the world of special needs parenting, every time your child makes progress you have the thrill of victory along with a deep fear that now they’ll lose the supports that have helped them make that progress. I knew Tessa’s formal Autism diagnosis made the odds of getting her into a classroom pretty high, but I worried. And sitting through that meeting did not help.

Graham displays a lot more of the classic signs of Autism than Tessa does. In many ways he was ahead of Tessa, but his difficulties are easier to see. Tessa, we learned from her evals, has an ability to focus that goes well beyond what you’d expect from a child of her age.

I knew this already, of course. I put her to bed the other night screaming because I didn’t let her finish cleaning up the game she was playing. She’d taken a good half hour to take every piece out and put it nicely on the board, and now she was putting them away one by one. I wasn’t waiting another half hour before putting her to bed. She can seriously focus on one little activity like this for an hour. I wasn’t sure it would extend into an evaluation situation, but it did.

Hearing people say great things about your kid in an IEP makes you proud and nervous. I didn’t breathe easy until we reached the end and finally everyone agreed that she’d be placed in an early childhood class. Then there was another month of waiting to find out if she’d be placed in Graham’s school. And now it’s time to get ready.

I’ve been excited because of the prospect of ONE drop-off and ONE pick-up. I’m sure any parent with more than one child understands that. Taking Tessa to daycare adds at least a half hour to my morning commute and again to my evening commute. And, of course, daycare costs money even when you find one that’s relatively affordable. The difference in my budget isn’t enough to make a huge difference in my life, but it will mean less worry and less times when things are really dicey. And the time. The time! I’ve been working from home two days a week and not getting into the office until noon. I’m excited to be able to get in at a more reasonable hour and not feel so rushed on the days I work and have the kids.

I can’t even express the madness that is my Monday through Wednesday each week. This is huge.

But this set of new beginnings is about transitions. It means Tessa leaves the daycare she’s been going to for a year and a half. It’s been amazing for her and she’s been really happy there. It means Tessa gets a whole new set of routines and people and everything and I know that’ll be a bumpy transition.

And it means figuring out the gaps in time before and after school, since Tessa is too young to go to the programs provided at school. 

Oh, and then summer will come and we have to figure out camp for TWO kids and the cost of childcare will go way up for 3 months.

So hey, things are about to change. Hopefully it will be for the better. And then they’ll change again. And again. And again. 

All I can do is hope for the best.

In Which I Respond to Things Other People Said On the Internet

I meant to make this a more regular feature after the last time I did it, but it’s been a while. My apologies. But it’s about all that’s coming today. I am SO GLAD I decided not to do NaBloPoMo, aka write on my blog every day for the month of November. I would be well past the chore phase and into hating it with every fiber of my being. Now I just feel kinda guilty for phoning this one in. Especially after I’ve really felt inspired to blog better the last few days and get back to my roots. It’s coming. Soon. Until then…

What You Might Not Know About Single Moms

My most recent article at HuffPo went up right next to this one and it made me crazy just to see the headline. Because this is ridiculous. This article is every single stereotype about single moms that exists in the world. It is nothing anyone doesn’t know. 

It’s also ridiculous and overgeneralizing and just makes me want to throw something at the wall. This idea that single mothers are only looking for serious relationships? Yeah, let’s look at every single mom in every book, movie, television show, etc. They’re all so cautious, hesitant, putting their kids first. It’s one of the reasons I don’t write about dating nearly as much as I want to. Because I like going out. I want a real relationship but I’m not looking for someone to be a dad to my kids. I’m looking to find a connection. I don’t know who these men are who find single moms as easy prey. They’re certainly not anyone I’ve seen, as the vast majority of messages I send online don’t get answered. People won’t even go out with you once. 

Oh, and I would LOVE sympathy. More and more, I’m finding myself surrounded by moms talking about things I can’t relate to. It’s kind of like going back to the early years with Graham where I was living a completely different life with a nonverbal toddler going through daily therapy while everyone else was having fun and going to the park and setting up playdates. My concerns aren’t the same as theirs. My daily issues aren’t the same as theirs. I feel like many of my day-to-day concerns are only safely shared with my other single mom girlfriends because no one else gets it. 

Not everything in this article is terrible, but the parts I hated I hated so strongly it’s hard for me to form coherent responses. 

Jerry Seinfeld Thinks He’s On the Autism Spectrum

Complicated feelings, I has them.

On the one hand, when we refer to self-diagnosis casually, it reinforces the idea that an autism diagnosis comes easily. That it’s something people are getting whenever their kid is a little awkward. (And that belief is alive and well.) I feel the same way about ADD, Bipolar Disorder, and other diagnoses that people say, “I’m a little bit _____________” or “I think I’m ____________” without any consultation or real consideration.

Autism is more than social awkwardness or introversion. Keeping that stereotype going is frustrating.

On the other hand, when high profile people with a diagnosis come forward, it’s empowering and inspiring. I have several friends who were diagnosed with autism as adults and seeing what amazing lives they have and what they’re capable of gives me hope for both of my kids. Autism is still a diagnosis that needs to be demystified and relate-able.

Women With Kids Are More Productive Than Everyone Else

Not a surprise. I really want to write a post on invisible tasks, especially when it comes to considering custody agreements. I had the kids most of the time for a good while and was hesitant to go down to 50/50 even though I thought it’d be good for the kids. I knew that I was still the default parent in so many ways and that their dad didn’t necessarily realize the things I did that I’d still be doing that would make 50/50 custody not really evenly divided. Luckily we got that point across and changes were made. Mostly it’s gone well, but the juggling can be tough and most mothers I know, whether working or not, end up taking on the vast majority of their household management.

But actually I have little to say about this article. Except that there are many times as someone whose life is just about as busy as it’s possible to get that someone tells me they’re busy and I want to laugh in their face. Lately it’s been particularly amusing as we’ve done some interviews with college-aged kids at work and, well, they talk about college as if it is the most overwhelmingly busy place in the world. Ah, youth.

I honestly want a t-shirt that says, Please don’t tell me how busy you are. 

Also I want a Book Riot hoodie. They are coming soon. I will have one.

This Is Our Autism

Thanks to my friend Jessica at Four Plus an Angel for asking me to co-host the This Is Our Autism linkup with her. Autism is different for everyone, it’s different at every age, and we want to give people a better glimpse of how different these experiences can be. You can link up your post at the bottom. 

Autism is all we know in our house. Maybe someday I will know what normal children of a certain age do. Maybe not.

 This is our autism This Is Our Autism

Our autism right now is a four-year-old getting ready to turn five, getting ready to start kindergarten. He is adorable and sweet, and it’s not just me that thinks so. It’s his teacher and therapists in their IEP reports, it’s the people who sat in front of us on the subway and kept turning around to comment on him. It’s just who he is. It is also, to some extent, his autism. He is always a babe in the woods, always naive, he does not know how to hide what he thinks and feels. 

He is vulnerable, but also aloof. If the bossy neighborhood girl his age slights him, he does not notice. He is still oblivious to most social signals. Though this is sometimes a strength, as it’s led to him engaging children he doesn’t know. He wants someone to play with him, so he just goes up and asks them, it is a simple formula for him. If other kids ignore him he usually doesn’t notice. 

We have left behind that mysterious boy he was as a baby and toddler, the one who existed in a different orbit, whose meltdowns were random and raging. Now he is in so many ways a regular kid, but in so many ways not like them at all.

He lacks a lot of the things people associate with autism now. He does have his obsessions, but they’re relatively minor. He loves trains and cars, he likes to have one with him, but he does fine without them. He doesn’t have his collection organized or names memorized. He just likes them to an unusual degree. 

If you know what you’re looking for, though, you see it. Right away. I say, “Graham, look at me,” and while his eyes sweep past me he will not look. His eyes dart all around but won’t land on my face. If he is calm and I say it again, then I get his eyes, they lock with mine for a few lovely seconds, he may smile, but he is happier when his eyes wander off again. 

And there is that quirkiness, that way of talking that doesn’t have the ease and attempts of cool that even little kids adopt to try and be big kids. 

He wears every feeling. His heart is not just on his sleeve, it covers him from head to toe. 

His emotions are ramped up. Anger and frustration are things he has no idea how to process. Happiness manifests physically. Anxiety is his most common emotion, though, the one I worry about. If his sister cries, he gets upset and is crying, too, within seconds. Not because he is sad, but because it rattles him. 

He says, “I love you, Mom,” every day. Unprompted. He wants cuddles. He wants to sleep in my bed. Every night. He is sensitive, talkative, inquisitive.

IMG 20140608 111007 e1405339873151 This Is Our Autism

Our autism is also a two-year-old. She is, in strange ways, both more and less autistic than her brother. She is still new to the therapy he has done for years. She is just barely starting to figure out this whole language thing. She is hitting her stride, hitting that uphill climb I remember well from her brother. Bursts of progress and language. 

She likes the grown-ups she knows, she happily babbles incoherently when one comes and finds something of interest to show them. She isn’t as interested in kids. Except her friends at daycare. Those are her people. That’s pretty much how she sees the world: her people. It’s not that there’s her people and everybody else. There’s just her people. Other people do not exist. 

She wants. She wants so many things. That is life as a two-year-old. But her language skills are those of a girl half her age. When she wants something, even something she knows how to say, she often won’t use that word. 

She is unpredictable, sometimes moody, and can go from happy to livid in moments. Getting to livid usually happens the same way. She wants something, she can’t or won’t say what it is, any gestures and language she uses is unclear, attempts to figure out her request only get her more angry. In those situations, even when you find the thing she wanted, she will often refuse it anyway. Only to accept it again a few minutes later. 

She lives in her own world until she wants something. Though the walls of this barrier are starting to come down. When she changes, it is not gradually but all at once. One day she was suddenly, startlingly clingy. And that is how she’s been ever since. She wants hugs, she wants cuddles, she wants to be carried. This from the baby who spent over a year avoiding cuddles, rocking, all those joys you normally get from your little one. 

She is quiet and hangs back. She is an observer. Though once she’s alone she is happy to be the center of attention. 

She has no obsessions, never has. Her interests change constantly. She likes whatever her brother is playing with. She likes girly things, especially if they’re pink or if jewelry is involved. She wants badly to ride her brother’s bike. 

She is learning to dance. She is starting to try and sing along. 

Her autism is tucked in nooks and crannies rather than visible on the surface. Her eye contact is definitely decreased, but is getting better every day. Most people, and this includes people who know her well, think her diagnosis is silly or absurd or unjustified. Even I spent a long time not being sure but knowing something was off. 

I worry that people look at our autism and think it is not really autism. My kids are both mild and will hopefully need services at school for only a few years and then grow beyond them. I know we have a different experience than those who deal with aggression or obsession or an inability to speak. But I worry that kids like mine are the reason people think that autism diagnoses are handed out like candy. That they’re just late talkers or just kind of quirky. 

Our autism is no longer a thing that brings me to my knees constantly. It is growing and changing every day.