autism Archives - Don't Mind the Mess

Feeling the Same Way All Over Again

Posted on April 25, 2013 by Jess • 12 Comments

Today Tessa is getting an Early Intervention assessment.

But I’m writing this post back on Monday. Right now she is sitting on the floor screaming. She won’t stop. I pick her up and she screams. I try to hold her close and comfort her. She pushes me away. I try to snuggle, she screams and pushes. She hasn’t napped well today so I think it might be teething. I get a dose of medicine for her and she pushes it away. I put her in my lap, cradle her so it’s easier for me to get the syringe in her mouth without spilling and she pushes it away twice more. Then, for no apparent reason, she changes her mind, holds the syringe tightly and puts it in her mouth, sucking the medicine out.

She’s been screaming and crying for a half hour or so. Maybe longer. It’s hard to keep track when she does this because I just want it to stop but I’m powerless to do anything. Every now and then she stops for a minute, distracted by something, then begins again.

I’ve gone back to turning on the television for a 1-year-old. I hate it. But with Graham it was a necessity at that age. It was the only thing that would let him focus on something hard enough to calm down. Finding Nemo used to be on a continuous loop at our house.

I’m not really that concerned about Tessa’s assessment today because I don’t expect it to be the last one. A few days ago something clicked in my brain. Tessa isn’t just my late bloomer. Something isn’t right.

The screaming, there’s that. And there’s some gross motor delays. At 14 months she still doesn’t stand unassisted. She doesn’t walk. There’s communication. She has no words. She doesn’t point or wave. Sure, she can do the physical pointing and waving motions and does them, but her pointing is never to a specific thing and her waving has nothing to do with hello or goodbye. Receptive language doesn’t seem like it’s made any real progress in months. She responds to her name usually, but doesn’t seem to understand anything else.

She doesn’t present just like Graham, but in my mind I’ve already diagnosed her.

I know I could be wrong. It could just be that I am seeing similarities because of the way Graham used to scream when he was that age. But I know what I see isn’t nothing.

She’s stopped crying, finally. I’ve bribed her with gluten-free cookies and a fruit pouch from my Type A swag bag.

She stands at the coffee table, holding herself in place, swaying a little, her eyes still ringed a little with purple, the hair on her forehead still stuck together with sweat.

Graham has just come off the bus. He is upset and a little disoriented because a substitute driver on his bus drove past our house. He does so well but he still struggles with the simplest things sometimes. So do I.

I am hoping Tessa’s struggle, whatever it is, is as easy for her as possible.

Tags: autism, parenting, Tesser • 12 Comments

Pink Shoes Part Two: Autism and Anxiety

Posted on March 11, 2013 by Jess • 1 Comment

The story of Graham’s pink shoes has only been half told.

Before we bought his new shoes he had a pair of white shoes where the velcro stopped sticking for no discernible reason. It would happen any time, any place. The more it happened, the more distracted Graham was by his shoes.

So the pink shoes weren’t just supposed to be his new, beautiful, fancy shoes. They were also supposed to be the end of the shoe drama. No more constant shoe fixing at home. No more notes from his aide at school. It would be the dawn of a bright new happy-shoe era.

“Make it hard tight.”

It took a whole day for Graham to say those four words. They meant that we were not entering a new golden age of footwear.

It was a sign that we have a new problem to tackle.

It started with the wind. As winter came on Graham started to get upset when the wind would blow. We didn’t worry about it too much. Who likes cold wind blowing in their face? He’s a high-strung kid. It’s just one of those things.

But it got worse. He got more upset. And it’s not like we were getting less wind.

We tried to fight back by giving him a mantra. When he’s distracted, he does better, so giving him something to say was helpful. When the wind started to blow and he started to cry, we’d say, “I’m not scared of you, Wind. I am brave.” He’d repeat after us. It didn’t really help but it gave him something to do.

Every day when he gets off the bus, before we even get in the front door he reports to me whether he was scared of the wind at recess.

When it came to the shoes, he requested they be “hard tight.” You’d tighten them as much as you could and it still wasn’t enough for him. When we got him measured for his new shoes we found out the old ones were a size and a half too small and yet he still wasn’t pleased with how tight they were.

The wind, the shoes, the way sometimes he’ll only calm down when he’s sitting on my lap being held tightly… it all meant sensory issues.

Honestly, it’s not the sensory stuff that scares me. A lot of autistic children have sensory issues. I’ve heard a lot of things and read a lot of things and I know I have resources out there.

What bothers me is seeing Graham get upset. Because it’s not just your garden variety upset kid. It’s anxiety. Real, down-to-his-toes, quivering anxiety. It’s turning into obsessiveness.

It’s a hard thing to see in a kid who’s only 3, who should have little more to worry about than sharing toys with his sister.

His age makes it tricky. What on earth do you do with a 3-year-old who has anxiety? An adult can take medication, sit down with a therapist, talk it through, develop coping techniques. But a preschooler?

It’s funny, as Graham’s autistic traits are becoming less and less obvious, other neuroses are popping up. This is the biggest and the hardest and the one that has me the most confounded. The pink shoes that were never tight enough were the final straw. This is something we have to deal with and we need to take steps soon. He needs to be able to go to school without distractions. He needs to be able to play at recess. We need to figure out if this needs to go in his IEP for next year.

I feel like we’ve had more than our fair share of good luck. We got an early diagnosis. We got 25 hours of ABA a week. We got excellent therapists and fantastic Early Intervention workers. We had a successful first IEP meeting. We got an aide for Graham for a few school hours a day. We got a fantastic little school with a wonderful classroom and teachers.

I keep waiting for our luck to end, but apparently it hasn’t yet.

I wasn’t sure what to do, so I called our Developmental Pediatrician. We check in with him twice a year and he’s the one who told us that Graham will probably no longer qualify for his diagnosis in a couple years.

He called us back with basically the best news we could’ve asked for. There’s a study for children with Autism and Anxiety where they’re using techniques they’ve used successfully with Neurotypical kids who have Anxiety. They’re going to get Graham in the study. He’ll get individual therapy.

I thought I was past the point where I’d cry over this stuff, but I did. I was just too happy to hear it. Sometimes I feel guilty that what is so hard for so many families keeps being so easy for us. But I can’t help but feel happy about Graham getting this treatment. And I’m hopeful that the amazing providers we have will soon be available to everyone everywhere.

Tags: autism, Grammer, parenting • 1 Comment

Picture Not-Quite-Perfect

Posted on November 28, 2012 by Jess • 6 Comments

It is taking me a little extra effort this week to get back into the blogging swing of things.

I blame the naps.

Eric is off work and I’ve been blearily plodding back to bed around 8 or 9 the last few mornings when Tessa goes down for her morning nap.

Then suddenly I wake up to start my day and it’s nearly noon and Graham will be home from school in 3 hours and I haven’t gotten anything done yet for the house or the websites and Tesser is still in her pajamas and it gets just a little overwhelming.

Nevertheless: the sleep part is awesome.

As for the state of things, I am feeling oddly good when you take out the too-much-stuff-to-do part.

Graham, as a 3-year-old, is certainly no angel but there are so many times lately where he’s been such a freaking delight that I have trouble getting over it. Having Eric around means I get more time to do stuff with just Grammer and I. I’m already looking back at myself a year ago and wondering why I thought having just the one kid was so rough. (The other night I took both kids out for a sit-down dinner BY MYSELF and it was no biggie. Whereas a year ago taking just Graham was this EVENT that generally left me worn down and exhausted.)

Theoretically if having 2 kids has made me more capable as a parent, it should extend to having 3 but HA! No thanks. 2 is it. Seriously. It. Like I lay in bed wondering if I should get my tubes tied. It.

Graham has started singing along with the radio, which has this effect on me that I can’t fully describe. When you grow up in a family where you all just sing with the radio and it’s just how it is and it never occurs to you to live your life any other way and then your child forbids you from singing with the radio and certainly wouldn’t dream of singing himself you start to look back on that old way of life as this perfection that you’ll never obtain. I certainly didn’t think it would happen so quickly.

It’s still not a regular occurrence. But music is slowly but surely becoming more a part of his life. I thank school.

Seriously, I cannot even express how many strides he’s made since starting school. It was TIME. It was time to go past the one-on-one therapy all day long every day. He needs it. And yes, he does have two teachers and an aide who’s there several hours a week, but still. I thought after ABA that he’d be doomed to backsliding and regressing and we’d never see the kind of progress that we once did. I’m happy to be wrong.

Picture Not Quite Perfect

As for the Messer, I kind of left everyone hanging after my freak-out post a while ago. There hasn’t been any real change. I’m still worried about her development but I’m feeling more casual, I guess. I’ve had the possibility of having 2 autistic kids in my head for so long now that it no longer feels frightening. Of course it’s still just a possibility, I know that if I get an evaluation that says she’s delayed and needs Early Intervention it’ll still be a rough discovery.

But I’ve also started allowing myself to focus on the good. Like how happy she’s been lately. She was sick for a few weeks and now that she’s getting over it it’s a joy to see the smile on this girl’s face. She’s responding to her name a little better. (And by her name I mean “Tessa Messa.”) She’s still not really crawling but in a day she went from struggling with the army-crawl-scoot to going anywhere in the room that she wants to really quickly.

Maybe she will make up the difference. Maybe not.

Is it weird for me to say that the hardest thing for me to think about isn’t her long-term future but her at one-year-old? Maybe it’s because the long-term future is something I can’t fully comprehend yet. Maybe it’s because Graham has made such great strides that I no longer worry about his future.

A lot of it has to do with the fact that I am still so tender about that one-year-old thing. That was our hardest time with Graham. It was my hardest time as a parent. It was perhaps my hardest time as a person, and it’s very possible it’ll remain the record holder if we avoid major catastrophe for the next few decades.

I still mourn one-year-old parenthood. I still struggle seeing one-year-olds, hearing people talk about one-year-olds, seeing typically developing and happy one-year-olds. I haven’t been able to get past it yet, it’s still very raw despite all the wonderful and positive change. That sadness from that year is still locked up deep inside me and every so often it just bubbles up to the surface.

As for the pediatrician, she is pretty much feeling the same way I am. We can call Early Intervention if we want to. We can wait a little while to see how much of it is her temperament. If we didn’t already have ASD in the family we wouldn’t worry much… but.

Maybe I should just go buy a Powerball ticket or something. Having a diagnosis in the family, beating the odds that way, you stop thinking of odds the way everyone else does. They mean very little to me anymore.

Anyway. I am trying not to dwell on it too much. What will be will be, right? I don’t want to spend too much time worrying about it when I don’t know yet. I plan to call Early Intervention soon and schedule an appointment in January. That’ll be 2 years after Graham’s eval. Ah, anniversaries.

Ugh, this stupid autism stuff. I didn’t really want this post to be about that. It was supposed to be about how I’m getting a chance to enjoy my kids lately. Because I am. Really.

Our family picture last year was certainly lovely and wonderful and other great adjectives.

But I LOVE LOVE LOVE this year’s. Because I feel like this is us. Our family. It is all just right now.

Who cares that this is the best shot we got? Who cares that we don’t have four smiles? We’ve got these two beautiful little ones and I’m so happy about that.

I’m happier to be a parent right now than I’ve ever been. I didn’t come into this family photo session expecting perfect. We’re not all dressed up (though we did manage to put Tesser in a dress because she does have a couple, she might as well wear them some time). I barely even have makeup on. I forgot to take off my glasses. And trying to get pictures with a couple little kids who are continually distracted by the cars driving by and who have never been great about smiling on cue or making eye contact is a challenge.

(The key to these pictures of Graham? Having him hold a rock in his hand. Who knew?)

So what if they’re not perfect? They’re us. And I love them.

Family photos taken by Hadley Langosy. She rocked it.

Tags: autism, Grammer, parenting, Tesser • 6 Comments

Help for Special Needs Parents from MyEdGPS

Posted on November 19, 2012 by Jess • 4 Comments

When you find out your child has special needs, no one gives you a manual. If you are lucky you find therapists and teachers and friends who know what they’re doing and will help you along the way. But if your child is 3 or older, you may find yourself hearing that strange acronym “IEP” and having no idea how to get one or what it should say or do.

We were really lucky with Graham’s first IEP (which means Individual Education Plan, by the way) because we had Graham’s Early Intervention and ABA teams there with us. They’d been to many of these meetings. We had our own little army there to fight to get Graham what he needed to help him learn.

But next year? It’ll just be me. I’ll be going in there by myself. And I’ll be at a table filled with people who do these meetings constantly, who see one kid after another, who don’t know my child the way I do. From here on out I feel like I’m coming at Graham’s education at a disadvantage. I need a roadmap. I need some help.

So I’m going to be a beta tester for MyEdGPS. I’m really excited about this site. A lot of us go through this battle alone without advocates or lawyers or supports. We don’t know what the official rules are, we just want the best for our kids.

The idea behind MyEdGPS is to give you that road map by providing you with tools to help you through your school’s processes and organize your IEP.

You need this. Because IEP’s are all based on laws. And laws are going to have specific steps you have to fulfill to get access to particular services. Here’s the thing: I’m a lawyer and I don’t have the time, energy or expertise to do this stuff right now. I have to continue to function day to day as my child’s parent and the research involved is extensive. I also have to make sure I don’t miss some crucial detail.

MyEdGPS has all these legal requirements already in their system and will help you get access to them. They even have letter generators and guides for you to use just the right language to trigger the help and services you need.

Maybe I’m a little hormonal but watching the video of how this all works and what it does for you gets me a little misty-eyed.

A difficult process becomes just a few clicks. Binders full of paperwork are now all organized for you online.

If this sounds like something you could use, please sign up to be a beta tester. The deadline is this Wednesday. Whether your child already has an IEP or you think they might need one, whether they have autism difficulties or ADHD or dyslexia or don’t have any kind of diagnosis, you can help make MyEdGPS something amazing and it can help you, too.

The site is free. And it also offers access to professional advocates and specialists for a reduced fee should you decide you want them so you don’t have to go hunting them down.

As a beta tester you’ll be able to provide comments to make the site more useful while they prepare for their February launch.

With all the expensive therapies and specialists out there, the special needs parenting community needs all the free tools it can get. Please spread the word by sharing this post or the link to others you may know who could use it to help their child. You can also follow them on Twitter or Like them on Facebook.

This post is sponsored by MyEdGPS, I’m working with them to help get the word out but I’m beta testing for free. I feel really strongly that this could be an amazing tool so please pass it along on Twitter, Facebook, Email, etc.

Tags: autism, parenting • 4 Comments

Things I Don’t Want to Say

Posted on November 12, 2012 by Jess • 26 Comments

I’ve been planning to write this post for a month or so. I’ve held off for a few reasons. One of them is that I know that a lot of you will be stunned.

It’s about Tesser. I’m worried about her.

Things I Dont Want to Say

So many of you have met her. And everyone raves about what a beautiful, sweet, smiley, happy baby she is. And she is all those things.

She also hasn’t progressed in any notable way in the last 2 or 3 months. Besides sitting and adding a combination scoot-roll mobility to her gross motor repertoire, it’s been stagnant. Her language has stalled out at just a little bit of babbling, light on consonants. She will respond to voices sometimes. She plays intensely and concentrates hard. Talking to her doesn’t give you smiles or feedback. She doesn’t mimic.

Yes, she is beautiful and sweet. And I’m also worried she’ll end up with an Autism diagnosis.

It’s preliminary, of course. This week she has her 9-month pediatrician appointment. I’ll talk to her doctor. And depending on our conversation, I’ll probably make a call to Early Intervention to see about having her evaluated. Delays have to be a certain amount behind before they can step in. But I’m seeing significant enough receptive and expressive language delays that I don’t feel comfortable.

This feeling has been creeping around the edges for months.

It’s a big change from how I used to feel. I was so certain that she wasn’t. Not this baby. Not this little girl that I held on my lap every day during Graham’s therapy and smiled at.

How could she look at me so deeply all the time and have anything wrong?

Of course I know better.

And I know what you’re going to want to tell me. You want to tell me she’s FINE. You’ve SEEN her. There’s NOTHING wrong with her.

But everyone told me that about Graham, too.

A child can be bright and charming and still be autistic. And I can’t put off thinking about it any longer.

So I’ll be talking to the pediatrician and possibly getting her evaluated by Early Intervention.

I am trying to learn my own lessons and not grieve for a lost future when I don’t even know if it’s lost yet. I’ve always seen those hyper-verbal little babies, so inquisitive and outgoing, and always knew I’d have one.

But a few weeks ago I laid Tessa down for her nap and I just had this sudden strong feeling. I am going to have two autistic children, I thought. And it will be okay.

Proclaiming any diagnosis right now is hilariously ahead of the game. But I’m getting myself ready for whatever news there is, good or bad. I’m not an expert.

But I know one thing.

It will be okay.

Tags: autism, parenting, serious stuff, Tesser • 26 Comments

Where’s My Time Machine?

Posted on November 8, 2012 by Jess • 7 Comments

I want someone to invent time travel.

I want to go back in time to visit myself. I’d go back when Graham was little and I was sad that he didn’t want me to sing to him while I held and cuddled him. I’d go back to all the times he told me, “No sing!” Heck, I’d go back to myself last month.

I’d sit myself down and say, “First of all, don’t be sad. He’ll be who he’ll be. Autism or not, some people just don’t like music. Second, you’ve got a long road ahead. He might surprise you.”

And then I’d show myself this:

Yeah. Past self? That is something you never thought you’d see. That is Graham singing along with a song. Sure, it’s quiet and hard to hear. Sure, it’s off-key. But he’s singing.

And did you notice? He’s almost dancing, too. Another thing you never thought he’d do.

Oh and then there’s the fact that he’s enjoying himself. You can’t really see it here so let’s look at another video.

So happy.

Maybe he’ll never be a singer. But he loves to sing.

I know you didn’t think it would happen. But it did.

Can you believe how fast it came?

Can you imagine what’s ahead?

It’s going to be okay, self. There’s so much to be happy about.

Tags: autism, Grammer, parenting • 7 Comments

Tag Archives: autism