Sunday, March 19, 2017

Nonverbal Autism

It has been a while since my last update regarding Jude and where we stand with his autism. Jude is still nonverbal but has begun communicating his wants and needs via PECS, a pictorial exchange system that encourages interaction and communication. Right now this is his preferred method of communication and we're thrilled with it.

Before PECS Jude was frustrated a lot. Being unable to express himself to everyone was the cause of most of his meltdowns. While I could interpret his body language well enough to know what he wanted or needed most of the time, there were still times I couldn't -- and no one else ever could. Now he can say what he wants when he wants to using his PECS book and that's been an amazing experience.

He attends an ASD preschool 5 days a week where he gets speech and occupational therapy two times a week and specialized PE once a week. The program is founded on positive enforcement, so he won't go through the same things I did as a kid. He also gets the benefit of socializing with kids his own age, both with ASD in the classroom and without on the playground. He takes a bus to and from school and his separation anxiety is much, much better.

All in all school has been a great help for him and I would absolutely recommend a specialized ASD preschool for all autistic children. Early assistance is key to avoiding frustration and discouragement.

PECS: How It Works

This is Jude's PECS book. Page 1 has preferred items and activities.

Page 2 has family members, TV shows, actions, and food choices.

Page 3 mostly contains activities but also the names of his favorite books.

Here you see the icon for "I" has been moved into the sentence area.

Official icons are attached to the pages via velcro strips.

Here you can see a homemade icon I've created for a specific snack.

Here icons have been moved to the sentence area to form a request.

The sentence area detaches so that it can be brought to someone to fulfill.

Here the request reads, "I want Cheerios."

Monday, August 1, 2016

Advice from People With Neurotypical Children

I get a lot of "mommy" advice from parents with neurotypical children that simply cannot apply to my Autistic, nonverbal son. They simply do not get, and even with repeated explaining, cannot get that my child could be so different from theirs. However that is the reality of Autism. I'm sorry, but my child is not like yours. I know you mean well but acting like I am wrong or narrow minded when I turn away your advice is hurtful, honestly. To both me and my child.

The reason I keep trying to point out the glaring differences between my kid and yours isn't to make up excuses not to do x, y, or z but to try to get you to realize these differences and hopefully get them to influence your future advice. Because I know the advice will never stop, you want to help -- but you have to consider your target audience.

I know my child. Even without words I know what he wants or needs 100% of the time. I'm never confused by his body language or facial expression. Never. You need to remember, I am Autistic too. I get it in an intimate way. I've invested all of my time and energy into understanding him. I know his needs and his capabilities where they are at right now. I know what will help him and what will hurt him and to be frank: I'm sorry but a lot of your advice would make him absolutely miserable.

School break?
"Take him to a water park! He can splash and play!"
"Take him to the State Fair! He's love the rides!"
"Take him to the movies! That new Kid's movie is out!!!"
"Take him to this festival, there's live music and fried food!"
"Take him the library, they read books to kids his age every ___!"

Okay. First things first, one almost universal thing among Autistic people is disliking crowds (read: contact with strangers). So with just that alone all of these things are out. He would hate them all. Too many people. He would get overstimulated and anxious in the parking lot before we even paid admission. C'mon.

But just for clarity, let's really break it down for my specific Autistic kid.

Water Park
The biggest issue is that my child has a major sensory aversion to wet things. It's something they have reported on repeatedly at his school. It's something I witness at home every time we try to paint or wash his hands, feed him soft foods, or have a bath. He enjoys a bath and the pool but only if he is absolutely in control of all of the water at all times and it doesn't go above his tush (rinsing and washing his hair is a battle of wills). If you add a bunch of splashing and waves and a big crowd and lots of noise... he would absolutely 100% have a meltdown.

State Fair
The biggest issue is the sheer amount of people who attend the State Fair. You are nonstop shoulder to shoulder with strangers no matter where you go. Even in the restrooms waiting for a stall. Even at the tables where you sit to have lunch. Even in the grass if you need to take a break. The furthest stranger is no more than a foot from you at any given moment. With his aversion to being touched (by anyone other than immediate family), his aversion to crowds, his aversion to loud noise, and his aversion to strangers... he would absolutely 100% have a meltdown.

The Movies
My son is full of energy. Rare is it that he ever actually sits down. It takes me an hour to get him to hold still long enough to fall asleep at night. Trying to convince him to sit for an entire hour is just not going to ever happen and the more you pushed it, the more upset he'd get. Whether Nemo is on the screen or not won't matter. Add in the darkness, the loudness, and the crowd and -- you guessed it... he would absolutely 100% have a meltdown.

Music/Food/Whatever Festivals
A. Crowds. B. Loud. C. Long travel times. My son gets ridiculously car sick if he is in the car for anything more than thirty minutes. 100% of the time, whether the road was straight or curvy, bumpy or not, he's thrown up and been miserable after 30 minutes in the car every time it's ever happened. Every single time. So while I would love to see that International Potato Festival in the middle of no where, it's unrealistic to even try because not only would he puke in the car... he would absolutely 100% have a meltdown once we finally got him there.

P.S. He won't eat anything there. I don't care how world renown that food truck is.

Library Circle Time
This is actually the one thing that might happen... sort of. He would mind it the least, certainly. The crowd being mostly children around his age and small enough to fit in the library would help. He would have absolutely 0 interest in sitting with them or listening to the story though. In all likelihood he would roam the library touching book spines and singing to himself, which I don't need to wake him up early on the second random whatever of the month for. I could just take him to the library at any time and let him run around (though in my experience librarians do not appreciate this at all).

In summary if it is a longer drive from where we live than 20 minutes, will have a crowd larger than 10 people, and requires him to sit down and/or pay attention, it's going to result in him having a meltdown and he really doesn't need that stress.

"Just let him have a tantrum, he'll get over it! My kids usually had a tantrum when we'd first go out but wound up loving it later!"

No, he won't. Unless he is removed from the stress, he will just get exponentially more miserable. The effects of a meltdown can been felt/seen for days after the initial trigger. I'm not going to put him through that so you can feel good about me having taken your advice. He is, again, nothing like your neurotypical child in anything but species. He has unique needs that you NEED to understand, for his sake.

I would love to do more of these types of things with him, but he is not quite ready for that yet and that is fine. Forcing him won't help. He'll get there. In the meanwhile, we'll be enjoying our sidewalk chalk, kiddie pool in the yard, games of tag, dance parties to Bjork, and walks through the neighborhood he's familiar with.

Now, I know you mean well, so here are some things he does love that are feasible you can work with when trying to suggest fun family outings to us because more than anything I want this post to be constructive criticism so that people can offer helpful advice to parents of Autistic children: produce (yes, fruits and vegetables), cats, friendly dogs, shapes, running, jumping, small crowds of similarly aged children, sand, Sesame Street, trees, bouncing balls, bubbles.

Example suggestion:
Local Farmer's Market
Pros: Lots of fruits and vegetables! He won't eat any, but he loves to handle and explore the shapes of them. Relatively quiet. Might be in a park with lots of space to roam and trees to touch. Also it's free.
Cons: Crowd may cause an issue even though it's generally small. Not a confined space, so may wander away from the 'attraction' entirely.

Example suggestion:
McDonald's Playplace
Pros: Small groups of children. A contained space. Brightly colored. Lots of centralized activities he can take part in or simply laugh and watch others take part in. Cost of a drink or french fry to get in.
Cons: Can be loud. Kids may be much older and bigger than him.

Please remember, there's nothing wrong with offering advice and I do always appreciate the sentiment. However it is vital for his health and my sanity that the advice cater to his unique requirements. I know you only want him (or the Autistic child in your life) to have a good time, so let's aim for that together.

Sunday, October 18, 2015

Musical Baby

One of Jude's favorite songs since forever is Twinkle Twinkle. I sing it, he sings it. For his birthday we got him a glockenspiel. Mostly he just bangs on the bars but the other day he actually played the first line of Twinkle Twinkle. I did not show him this, Aaron did not show him this. He figured out the notes and played it by ear.

Maybe his middle name should have been Mozart.

Sunday, October 11, 2015

Three Years Old!


New friends

His birthday cake, yum.

Birthday smiles!

First Duplo!

He got the hang of it quick!

His own clock.

A gator glockenspiel.

I think he loves him!

Tiny Tuxedo Mask



A book before bed.

How big he's gotten!

Thursday, October 1, 2015

Diagnosis, Ongoing Speech Therapy, Preschool, etc.

For those of you asking for an update, here's a portion of the letter regarding Jude's official diagnosis and ongoing speech therapy and qualifications for continued assistence in combination with beginning preschool this fall. Names and agencies edited out for obvious reasons (as much as I love meeting new people, being surprised is actually quite terrifying).

The agency was absolutely thrilled with the loving environment we provide for him at home and how involved, patient, and understanding we were even during his more difficult moments. Apparently that kind of thing is not common in their experience, which makes me kind of sad. Your children need your love and acceptance, especially during hard times.