Tag Archives: Tesser

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.

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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.

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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. 

 

Now We Know

I started thinking about it before she even existed. Long before she was born, I was thinking about it. When she came I was still thinking about it. And now the time has finally come to know for sure.

Tessa is on the autism spectrum. Her eval was last week and this week we got her diagnosis. 

Before she was born I was happy she was a girl, because I wanted a girl but also because girls have a lower incidence of autism. And after she was born I was happy that she was quiet and calm and looked at me.

But things changed. I started noticing things that weren’t quite right. I started making a list of them in my head. I brought in Early Intervention. I went back and forth on what to do, but I was always watching and considering.

Finally I felt like I knew what she was capable of. I just didn’t know if that meant autism or not. Her testing had virtually no surprises. I’ve seen the tests before and I knew what she’d be able to do and what she wouldn’t. I wasn’t surprised that her gross motor was a little behind but her fine motor was pretty impressive. 

So there it is. I’m already getting appointments scheduled. It looks like Tessa may be able to have one of the therapists Graham had before he aged out. I like that. I liked her, it’ll be nice to see her again. I have to figure out how we will fit therapy into our lives. It was a full-time job before, one I sat through hours of every day. That’s no longer possible. And I don’t really have anything beyond the vaguest idea of how to make it work. 

I’m not upset or angry. If anything, I’m relieved. A diagnosis means we have a path to take forward, one I’m familiar with. Without it I’d be wondering what I was supposed to do next to help her. I’m confident she’ll do well and be taken care of even if I don’t know exactly how it will happen.

The only strong emotion I fell was the giant exhale of finally knowing. It’s been in my head so long, causing me turmoil and worry and stress for so long, I’d already felt all that sadness. Now I’m happy to let it go and start moving forward.

Progress

With things in such upheaval, even normally “big” topics manage to get a little sidetracked. I haven’t talked about Tessa’s development since October, nearly 4 months ago.

I still haven’t had her evaluated.

That’s about to change.

I still can’t explain why I’ve been so ambivalent about her given my general gung-ho approach to early testing and diagnosis for autism and developmental delays. But I have. I suspect a lot of the delay has been due mostly to circumstances. The separation, divorce, working, moving Tessa to daycare, it’s all been distracting me. And giving me an excuse to delay. Let’s see how she’s doing. Let’s get her into a new situation and see what happens. She’s progressing, let’s see how she does.

But I’ve finally reached the point where it’s been long enough. She’s 2. We only have a year until her care is turned over to the school system. We need to move and if she qualifies for a diagnosis it’s time to get it.

I know it’s easy to see our pictures and think she’s a typical toddler. But she’s not. And it’s obvious to me. If you asked her, “Where’s your nose?” you wouldn’t get a response. Most likely she wouldn’t even look at you. 

Seeing all this, knowing it’s there, having known for a while, I’ve already moved into special-needs-parent mode. I celebrate all her small steps forward. I’m happy to see her develop in the ways she can. I appreciate her good humor when she has it. I don’t push my expectations beyond what she’s capable of.

So yeah. That’s where we stand. The paperwork is filled out. It’s getting sent off. And hopefully she’ll have an evaluation quickly. And hopefully I won’t be kicking myself for waiting this long further down the line.

 Progress

See that smile? That’s one of our newer developments. Happy Tessa has started to show up more and more over the last month or two. Happy Tessa isn’t the same as Easy Tessa, but there’s something about seeing your child smile when she normally has a vacant expression, it’s special.

And on the bright side? I see less of the gloom and doom, the worrying, the hand-wringing in myself. She is who she is. I want to help her be all she can. And maybe it’s just all the other crazy going on right now, but this feels like something I don’t need to feel anxious about. 

I guess she’s not the only one progressing.

Two Little Owls

I think it’s time for a little old-fashioned photo dumping.

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The elusive smiling Tesser Messer. So hard to get smiling pictures of this baby. It’s not that she doesn’t smile but they’re not as common as they once were and she doesn’t hold them for long. Luckily at the Halloween party we went to there was an indoor slide. Girl loves slides.

Girl has also been a good sport about her hair which continues to not part like a normal girl’s hair. She’s letting me put barrettes in it more often to keep it out of her eyes. But man I wish it would just part so it’s not always hanging down in her face.

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There was also much jumping. To me in these pictures Graham seems to look like he suddenly aged 5 years while I was looking the other way. 

The party was at Early Intervention. Graham’s old speech therapist was there. It was the first time she’d seen him in over a year. He is a totally different kid than the one she remembered. It was nice to be reminded of his progress. Graham didn’t remember her at all, I feel a little bad that these people who were so instrumental for us and for him are no longer a part of him that he knows.

My two little owls received many compliments. I am not much of a crafter, and on the day of Halloween I had to spend a few hours stitching on their feathers after they’d started to fall off. (Curse you fabric glue!) So I was grateful for the kind words. Graham enjoyed his costume, which was the most important thing. Tessa tolerated hers just fine, another win. Perhaps we can find a way to make our costumes out of hoodies every year?

Graham requested his costume be a rainbow owl. Which is just so totally him. I did my best to make his vision come alive.

 
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I haven’t been able to take many pictures lately and this was a perfect opportunity. I didn’t get much in the way of practice and working on framing and crafting an ideal image. But I got my two littles at ease and just as they are and that is just what I wanted.

One Problem, Two Solutions?

When Graham was 18 months old, he got an Autism diagnosis. He didn’t really have words. He didn’t understand much at all. He was often frustrated, regularly angry and difficult to calm. 

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Tessa is now 20 months old and I still haven’t taken her in for an evaluation. She is just now starting to show words. Her receptive understanding is limited. She is sometimes frustrated, usually mellow and has only the occasional meltdown.

 One Problem, Two Solutions?

I am trying to tell whether taking such different approaches to these two kids is a good idea. Mostly I’m trying to make sure that I’m not letting Tessa’s laid back attitude get in the way of her progress.

Part of me is stunned that I still haven’t taken her for an eval. I’ve had enough evidence to get one for months. I’m a huge believer in early diagnosis and therapy.

The problem is that part of me is watching her make progress on her own and thinking that it’s enough. 

Is it, though? She has things Graham didn’t have: a sibling who shows her so much more to model with language, play and behavior; parents who understand developmental delays and know how to interact with a child who has them; a group of peers at daycare where a bunch of the kids are close to her age. It’d be crazy to expect her to show as much of a problem as Graham had when she has so much that he didn’t. 

But once Graham was her age he started getting serious intervention. ABA 5 days a week for hours at a time. I just went back and read my post on Graham’s progress once he was getting 25 hours of therapy a week when he was 21 months old. I think of Tessa as being so much more advanced, but I can see that he’s basically caught up to her current state and with therapy he continued to make huge progress. Which means my baby girl, whose progress has been making me feel like she’s okay, will soon be lagging behind her brother. I should’ve known this, I should’ve recognized it. 

I don’t necessarily want to push her too hard. I don’t want therapy to take over our lives again. It was one of the reasons I quit my job last time and that’s not something that can happen again. 

On the other hand, I’m seeing her make progress on her own and I’m hoping she can keep going. Just this week her language has gone from occasional imitating of words as a game to doing them in conversation. Plus she’s finally starting to use words appropriately (“apple,” “no,” “mommy,” “daddy”). 

I don’t want to hold her back from her potential just because she’s so mellow that she doesn’t show her problems as easily. But I don’t want to step in and take over her life with therapy when she’s doing well on her own.

I basically don’t know what to think. Or rather, I’m thinking an awful lot of things and I don’t know what to do.

She’s always been a tiny and adorable mystery. And I still haven’t figured her out.

Brother and Sister Bonding

When you become a parent you don’t magically start enjoying things you didn’t enjoy before. Which means that even though I have a 1-year-old and a 4-year-old, I don’t suddenly enjoy playing the kinds of games that little ones enjoy. I know that part of parenting means doing stuff you don’t love, but the tedium of little kid games can wear on a girl.

Which is why I’m so thrilled about our latest sibling milestone: THEY PLAY WITH EACH OTHER.

I always knew I’d have more than one kid. And I always hoped I’d have kids who enjoyed each other. I know these things are hard to control, that there’s only so much you can do to make it happen. When I was little I was always solitary and preferred the company of adults to younger children, so I know this well. 

But you guys. My kids. They play with each other. They enjoy each other. The sibling annoyances are minimal. It is so freaking awesome.

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Tessa wants to do everything Graham does. She’s not always capable of it, but she holds her own most of the time. She likes the stuff he likes. We’re developing little rituals in our day. They play outside before Graham’s bus comes. After he gets home, Graham rides his balance bike around the sidewalk and Tessa pushes her little shopping cart. 

Often she just watches him, laughing with delight. 

He has become more tolerant of her when it comes to his beloved trains. 

In the car they’ve started tossing toys back and forth to each other and laughing.

We each hold one of Tessa’s hands when we walk.

It is supremely awesome.

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A lot of this has to do with Tessa finally getting comfortable enough walking that she can hold her own with him. She still has a little learning to do when it comes to going up and down stairs and ramps, but she’s competent. It also has to do with Graham’s growing appreciation of his peers. He loves playing with any kid and never notices if they’re his age or older or younger.

But so much of it is just that unpredictable unknowable stuff about your kids that you just have to let happen and see how it goes.

I know this may be short-lived. Tessa still isn’t talking and adding conversation to the mix could change things. There may be fights over toys and belongings. There may be more differences in what they enjoy as they get older.

They may never mesh again the way they do now, or they may always be close to each other. I don’t really know and all I can do is encourage them to care for each other and hope for the best.

Right now, though? I’m loving every minute. It fits with my parenting style. I tend to be minimally involved with the kids and their play. I tend to let them be independent and do things for themselves. I will play with them, but I encourage them to explore on their own.

I am trying not to get all invested in them as a super brother-sister team. I know in these early years things can change quickly.

So yeah. I’m enjoying it.

I’m enjoying the mornings Graham and I will wake up before Tessa. When we hear her voice Graham goes into the room and greets her and I melt.

I’m enjoying those mornings when Tessa and I wake up before Graham, how they spot each other when he comes quietly down the stairs and smile.

I’m enjoying when Graham’s bus comes, Tessa stops in wonder then runs towards it with delight, then cries when Graham gets on and she can’t join him.

The only thing I enjoy even more is the look on her face when the bus comes back in the afternoon and he climbs off.