Tag Archives: autism

autism, early intervention, PDD-NOS

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. 

 

Sesame Place: Special Needs Accommodations

Sesame Place 300x300 Sesame Place: Special Needs AccommodationsThis is the 3rd post in the Sesame Place series. Part 1 was planning your visit and deciding if it’s right for your family. Part 2 was about when to save money and when to splurge. And today I’m talking about Sesame Place and special needs accommodations. My children are autistic, but any disability would go through the same basic processes.

Sesame Place in 2012 was our first theme park visit and our tickets were provided so we could get a chance to try out special needs accommodations in that setting. Now we’ve been around the block a few times and this time came with 2 special needs kids. Here’s how it worked for us and what to keep in mind for your family.

Getting a Bracelet

2012 08 29 13 01 45 897 300x224 Sesame Place: Special Needs AccommodationsWhen we arrived we went to the Welcome Center (easy to miss, right next to the entry gates) and signed up both kids for the Ride Accessibility Program. I gave them the kids’ diagnoses and wasn’t asked any prying or unnecessary questions. They even had Graham still in the computer from our previous visit so we could speed right through. Both kids had their height checked to confirm the rides they were eligible for, and then each one was issued a bracelet.

The bracelets are bright orange and ours had 3 tabs off the side. Three of the water rides only get one line bypass per person, though this wasn’t fool proof, I noticed some of the tabs were coming loose in the morning. Still, we made it just fine. You’re also given a sheet of paper for each person which has additional information. You show this to the ride attendant each place you go, though we had to get a waterproof pouch for it later in the day when we hit the water rides.

Rides and Shows

Like most parks, the disability entrance is just the exit. It’s usually right next to the attendant’s controls. At Sesame Place, it also happens to be the location of Abby’s Magic Queue, aka the line-skipping pass. I actually liked that part of it since using that entrance was used often enough that we never had to try hard to get anyone’s attention. 

Our experience with the employees at Sesame Place was really great. Everyone was very kind as they let us on and off, if we ran into the slightest hiccup they were very apologetic. As my kids have invisible disabilities, it was nice to have the paperwork to just hand over and not have to answer any questions. (And the paperwork rarely got more than a cursory glance.) 

2012 08 29 12 21 04 773 300x224 Sesame Place: Special Needs AccommodationsIt’s not quite so easy when it comes to the shows. For us, going to a show is a bigger commitment than a ride. It lasts more than a couple minutes so there’s always the potential that we’ll have to make a quick exit. Luckily for us we snagged a few of the reserved disability seats at the show we attended in 2012. But you’ll still want to arrive a few minutes early to make sure you can get to the seats. At the indoor show we went to in 2014 it was so full by the time we came in right before showtime that disability seating wasn’t an option.

Shows do have loud sound, those of you with noise sensitive kids will want to bring along your noise-canceling headphones if you think they’ll want to go. A few rides also have sound, but overall it wasn’t bad.

The Water Park

For sensory kids, the water park will either be a breeze or a nightmare. You probably know which kind you have. Graham was pretty happy with all the water rides, but he was not terribly enthusiastic about the two big spray areas, especially the Count’s Splash Castle, which was really loud, really crowded, and really hard to keep an eye on your kid. Ernie’s Waterworks is smaller, has younger children, and is much more low-key, though neither of my kids were up for it. Tessa had to be coaxed through a few parts of the Lazy River because she didn’t like the parts where she could get splashed or sprayed, and so she skipped some of the rides all together to avoid a freakout. 

Tessa’s favorite water ride, Slimey’s Chutes, was a small and gentle tube slide that lets a parent go in the back and a child in the front in a double tube, or a child solo in a single tube. It only has one line bypass and the line can get long. While we waited in line for her second go-round I saw a special needs family encounter a problem that I hadn’t considered. Their special needs daughter, a teenager, was too big to go on the ride with a parent and had to go alone if she was going to go. For most of the rides this wasn’t an issue at all, but for this one my heart went out to them. But the story ends happily! She went by herself with minimal help from her dad, and her mom and brother cheered for her at the bottom. I may have gotten a little misty watching it all unfold.

But for most children, they’ll be able to go with a parent for several of the water rides, including Slimey’s Chutes, Big Bird’s Rambling River, Sky Splash, and Sesame Streak. (The same goes for dry rides, where you can generally be in the same row/car when you ride together.) 

Allergies

We don’t have food allergies in our family, but I did see that Sesame Place now offers three special allergy-friendly snack packs (free from wheat, milk, eggs, peanuts, tree nuts, shellfish, fish, and soy) that you can get at various parts of the park. You can also go to the Welcome Center at the front for allergy information and an allergy card. As their food policy does allow medically necessary items, you may be able to bring some food of your own inside. Best to read their info in advance or contact them before your visit.

 

I recommend anyone visiting with special needs go over Sesame Place’s accessibility page and their full guide.

We received complimentary passes to Sesame Place in 2012, but financed our 2014 trip on our own.

In Which I Respond To Things Other People Said On The Internet

I am not really one to take part in the back and forth when someone writes something that is popular or mildly controversial and then we all have to have our say about it. But WTH, it’s a holiday weekend. Let’s go crazy.

To The I Won’t Get Divorced Guy

Look, I get what you’re saying. Marriage totally suffers when you have small children. Parenting small children turns some of us into our worst selves and it can feel hard to find the light at the end of the tunnel.

BUT. “I don’t think couples with small children should be allowed to divorce.” This is a ridiculous thing to say. 

If you have more than one kid, the time you spend with small children can be well over 5 years, maybe 10. That is an awfully long time to ask a couple to deal with being miserable. It can be such a long time that it may create a void that can no longer be filled. 

I think a better thing to say would be, “Small children are not always small. Things get better.” Or maybe, “I feel you, it’s hard.”

You’re adding to the stigma of divorce, this thing I constantly hear people say that, “People just get divorced like it’s nothing. They don’t even try.” I hate this. Because you have no idea from the outside what is happening inside a relationship or how long it’s been bad. You have no idea how hard it is and what a large burden you take on when you make that decision. People who are not divorced have many opinions on people who are, and it’s kind of like people without kids having opinions on childrearing. 

So dude, I know you weren’t trying to be harsh. But what works for you works for you, and doesn’t mean you are now able to tell everyone else how it should be. We can only ever be experts on ourselves and our own families.

To The You Are Not A Single Mom Lady

Thank you for saying something I haven’t been gutsy enough to say publicly. But I think about this a lot. I don’t just think of single moms, I also think of parents who have a partner who’s rarely home due to a job with crazy hours, or one who travels for months at a time, or one who has military service. Parenting alone is rough. I admit I feel a little guilty that I get every other weekend off, that I have an end in sight, albeit a brief one that will be spent mostly recovering. 

I know we all have stuff that’s difficult for us, that everyone has their own thing. I had to learn that as a special needs parent and I’m re-learning it as a single parent. But I would never be able to say this. So thank you for taking one for the team. 

To The Idiots Who Write Headlines At The Washington Post

Thanks for your scaremongering. That was really awesome of you. Even though your article goes on to talk about how we shouldn’t draw sweeping conclusions, that research shows the vast majority of autistic people are law-abiding (many of them ridiculously so), and all sorts of other reasonable statements, your headline is just bad. And the first 6 paragraphs that throw in Sandy Hook and all that are not much better. Please stop doing this. 

Oh, and media in general, stop reporting on preliminary studies. It is not useful information. Maybe read this and give it some thought.

 

Updated: I found another one!

To The Never Too Busy To Exercise person

So no one is too busy to exercise, eh? It’s just about priorities and habits, eh?  My day consists of getting my children ready for the day, taking to their places for the day, going to work, working, leaving work, picking up all the children, getting the children fed, getting the children in bed, and then collapsing into my own bed. I could probably squeeze some exercising somewhere, though on a day when I have the kids the gym or a run is not an option unless I want to feed my kids well past dinner time and then have a ridiculous evening trying to get them to sleep well past bedtime. If I didn’t have kids or if I had a spouse, maybe I’d be sitting here nodding my head and thinking, “Oh, right, I have no excuse.” But yeah, not all of us have that. (I suspected the expert in this piece has no children, and I was correct. I looked it up.)

I like your small steps forward philosophy. But seriously, do not tell me how busy I am. Do not tell me what I have time for. 

 

Okay, that all felt pretty good, I have to say. I think I get why people enjoy arguing about things on the internet.

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.