autism, early intervention, PDD-NOS

Tag Archives: autism

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.

Forgetting and Remembering

Sometimes I forget. I forget Graham is autistic, I forget that he’s different. It’s so easy sometimes. He just exudes kid-ness so strongly and so normally that there’s no reason I should think about it.

And then there’s the possibility that he may no longer qualify for a diagnosis. It’s been brought up by his doctor. And while it’s left me feeling unsure of how we fit into the world, it’s certainly been happy news.

There are other times where I can’t forget. It’s been like that this past week.

First, there was the evaluation in the mail that Graham took a few months ago as part of a research study. It’s actually Tessa who’s enrolled, but Graham went in for one session. They did cognitive analysis (average! Yay for average!) and they did an autism diagnostic. It shouldn’t have surprised me that he qualified for a diagnosis. And yet it did. 

Second, there was the email I sent to Graham’s teacher. This is his second year of pre-K in an integrated classroom, but next year he enters the big bad school system of official Kindergarten enrollment. So we will either get a placement through the regular system or we will get one through an IEP. And I wasn’t sure which it would be. He’s done so well, he’s made such progress, I’ve been so pleased. I honestly felt we had a good shot of doing a regular placement and then setting up IEP supports to make sure he adjusts. But his teacher is the authority so I asked her so we could plan while the schools are open for us to take a look. She said he’s best off staying in an integrated classroom, which means no regular placement, which means he’ll move to a different school next year. (His doesn’t offer integrated Kindergarten classes.) Again, it shouldn’t have surprised me. But it did.

And finally, there was the trip I took Graham on to the Christmas Train in the Cape, which we’ll be reviewing later this week. It was just the two of us, I could focus completely on him. And what I saw was a whole lot of autism. Most of the time he is in the same routine, the same places, the same people. I changed it a little and saw what I hadn’t seen in a long time. Fear, shyness, blocking out the world. I went back to all the lessons I’d spent years learning. I didn’t push him, didn’t encourage him to break out and have fun. I just let him be, let him take his time, let him enjoy in his own way. It’s been a while since I’ve been there. Another surprise that shouldn’t have been a surprise.

 Forgetting and Remembering

I don’t have my heart set on him losing his diagnosis. It’s not my goal for him. But it was on the table and it changed the way I was thinking about the future. And now I’m changing again, pulling back a little. I’m returning to the roll-with-the-punches approach to parenting where I stay cautiously optimistic, challenge him carefully and with plenty of support, and make sure he always has his safe space at home.

On the bright side, another thing happened this week. We’ve been having dance parties at home (the kids and I are partial to the Ke$ha station on Pandora. Shut up.) and Graham has been asking for them more and more. So I thought, maybe this would be something he’d enjoy. We did some quick research, sent a few emails, and were invited to go to a Peewee Hip Hop class on Saturday morning. 

He wanted to go, he was excited, but he also expressed some fear. He didn’t want to go into the classroom without me. I tried to prepare him, but I didn’t know much about how the setup would work. I think we were both a little anxious and a little excited. Sure enough, there was a parent waiting area. No windows into the studio. But there was a video camera inside that showed his class on a tv to the waiting parents. 

 Forgetting and Remembering

I didn’t play the A-card when I brought him in. He’s 4, the class is for 4 to 6 year olds, I was going to play it by ear, as usual. See how they acted, see how they treated him, let him be a part of his age group. I’m sure he wasn’t the first 4-year-old to have a little anxiety about his first class. The staff showed him the camera and the TV, the teacher brought him inside, and it was a done deal. He was involved, he didn’t ask for me, he just enjoyed himself. 

And during those 30 minutes I didn’t forget. But I sure did feel proud. 

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. 

IMG 2367.v2 e1382980392880 One Problem, Two Solutions?

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.

Special Needs, Entitlement and Disney

128 e1381769896263 Special Needs, Entitlement and Disney

Baby Jess at Disney.
Ugh, so entitled.

Over the last month or so a lot of people have asked my opinion about the new Disability Policy at Disney. My answer has been pretty consistent: I never took my kid to Disney. I haven’t used the old system. I don’t know enough about the new system. I’m waiting to hear the verdict from friends who get a chance to try it out and report back.

I also say that I feel really lucky that we will probably never need the Disability system. When we went to Sesame Place a year ago, Graham needed the special needs pass. But if we went now? I wouldn’t get it. He’s not great at waiting, but a lot of 4-year-olds aren’t. And his ability to be redirected and distracted has increased hugely. His understanding of rules and lines and fairness have made amazing strides. He could tolerate it, we’d have to plan accordingly, but he’d be okay. And unless I see signs that he needs real assistance in the future, my plan is to stick with being a typical guest.

But.

One thing that’s bothered me in these conversations is that people have expressed concern that special needs families are entitled or spoiled. That Disney is a luxury and we shouldn’t be so hung up on it.

I’ll be honest, I felt the initial response to Disney’s change in policy was pretty strong, especially when details were very slow to come out. I tend to be a wait-and-see person, an evidence-based person, and press releases make me skeptical. I knew it could be a horrible program it could be a nice program and I wasn’t ready to holler until I knew which. But I also understand that big reaction, the initial fear and worry that this is another thing that’s going to make life harder.

What I don’t understand is the reaction of people who think we are being hysterical or entitled. Special needs parents are my people. I have never met a single one I’d call entitled. (We do kind of excel at hysterical, though.)

Yeah, Disney is a luxury. And the fact that they give any kind of accommodations is something to be celebrated. 

But let’s think of all the places where our kids DON’T get accommodations. The grocery store. The pharmacy. The mall. The playground. The museum. The airport. The places we take them every day. We have to do it all on our own, we have to do our best to prepare our kids for a world that is a constant struggle. They never get a break from it and neither do we.

And the accommodations we do get? We get one sensory-friendly event a month, maybe, if we’re lucky. And you don’t get a lot of choice about it. There’s one movie showing in one theater at one time.

We have to fight to get accommodations for them at school and then fight to get follow through. Fighting is kind of our default position. 

So yeah, Disney is a luxury. And it’s MORE of a luxury for a special needs family than for other people. Because going somewhere that treats us well, that lets us do things the way we need to do them, this isn’t exactly an everyday occurrence for us. It’s also a luxury that requires a lot of money, a lot of time and a lot of preparing our kids for what is by no means guaranteed to be a successful or happy visit. 

If you responded to the news about the Disney disability policy change by thinking it’s just a luxury and we shouldn’t feel entitled to it… maybe consider that we don’t feel entitled. It’s just that every loss, every thing in our lives that’s that much more difficult is one more thing we can’t do. 

For a little more on how things are shaking out now that the policy is in effect and how autistic kids in particular manage parks, take a look at this post.

Why Does It Hurt?

 Why Does It Hurt?It doesn’t hurt as much or as often, but it still hurts.

It hurts to see the things my kids can’t do, the ways they don’t fit in, the things that hold them back. It hurts even though we’ve made huge improvements and tons of progress. It hurts even though none of their issues really make our lives a lot worse. (The closest is Tessa’s delayed language, but since she’s such a laidback kid it doesn’t impact us nearly as much as it did with Graham.)

So I find myself wondering, why does it hurt?

Given my years of special-needs parents experience, I’ve got a few answers, even if they’re not satisfactory.

Sympathy

Feeling bad for the kids, hurting when they hurt, wanting them to have things without such a struggle. That’s the easiest answer. This was a big one a few years ago when communication was something Graham couldn’t fathom and all day he struggled for every little thing. 

Of course, these days this is a smaller one. Tessa’s difficulties with her language delay rarely rise above the level of normal toddler annoyances. Graham doesn’t recognize the things that still hold him back, in some ways those sub-standard social skills are a blessing.

Ego

I learned a lot about this with Graham. I spent a year being proud of his every little accomplishment. I thought I was being a good parent, I thought I was just proud of him. But really, it was a way of stroking my own ego. He’s doing something early? I feel good about myself. He’s doing something late? I feel like I got a C on a test.

To some extent, it’s natural for your child, especially a baby, to be an extension of yourself. But it’s also easy to take too much pride in something. Like the way athletes brag over their tot’s ability to kick a ball or bookworms brag about how much their baby who can’t yet read enjoys books. When our child does something well we feel validated. And it tends to continue long after they’re babies, long after our care and influence overrides their own autonomy.

Nostalgia

Having a child lets you re-live your own childhood vicariously. You get to choose the books and the toys and the songs and the games that will matter to your kid the way some things once mattered immensely to you. Watching your child discover something you love is golden, it’s true. 

 

All these things make sense to me. But I don’t know why they still apply. I don’t yearn for my children to be “normal.” I want them to be their own selves and grow at their own pace. And yet it’s still somehow painful when I see Graham interact with typical kids his age and see the differences. It’s painful when I see babies younger than Tessa whose abilities are well beyond hers. 

I feel like I should have control of this by now. I should be used to it by now. I should be over it by now. And yet it all still stings. It hurts me even though it doesn’t hurt them. 

Having spent a lot of time looking at my emotions, I’ve decided there’s a fourth category:

Instinct

There’s just a part of you that not only expects your child to be healthy and normal but needs them to be that way. At least there is that part of me. 

And all I can do about this instinct that keeps inserting itself into my thoughts is remind myself that my kids are happy.

They are happy. They love and they are loved. Decreased eye contact cannot change that. Social awkwardness cannot change it. Delays in motor skills or communication cannot change it. 

I know from watching Graham grow that he’s developing into his own wonderful person. He is starting to learn skills to help him make his way through the world. And he will make his way through it. And we are lucky. Being stuck in this only-mildly-special-needs place has me perhaps more aware of this than most people. I know how much harder things could be. Yet that feeling of gratitude and perspective is never quite as strong as the pain. Instinct is powerful stuff.