Always Do the Hard Things

Caleb has a lot of needs. But he also does a lot of things FREAKING AWESOME. There are aspects of Autism we don’t live. Caleb does not have severe sensory integration deficits. He eats well. And he only eats edible things. His behavior is totally redirectable. His play skills are amazing. I can take him lots of places. On the contrary, he does not have many words. And he has even less friends than he has words. There are good things but there are also hard things.

I feel…I hope….that a lot of the things Caleb is doing well in the world right now are because we made hard decisions when he wasn’t doing as well that are ultimately, paying off. When he was 2 and a half, we took all the furniture out of one room of our house and replaced it with an outdoor plastic play set. Mini rock wall, ladder, slide….because it was winter and we needed an easier way to drop everything every 90-120 minutes to stay on a sensory diet. And because I hadn’t had chairs in my dining room for over a year because his heavy work seeking tendencies meant he pushed them all through the house and scratched the floors. I wanted him to get sensory input. Functionally. Pushing a heavy oak chair down the hall and back would crush his barely-able-to-walk sister. Everything in the china cabinet came down so we could put a trampoline in the living room. 80 year old place settings and Tiffany wine glasses were replaced with baskets of Playdoh, bottles of bubbles, and velcro picture strips. We did not need pretty things. We needed functional things. The play set moved outside but I still have crayons instead of wine carafes in my china cabinet. (Cause let’s be honest, I don’t need to waste an extra step by using a carafe).

I made a decision early on….even before I knew we were lifelong hosts to Autism….that we weren’t going to play tablet games. (This was a personal decision only. It is not a judgement, it is not an official stance, it is not anything other than a description of how we roll around here). After I found out though, that Autism was pulling up an uninvited chair to dinner, I COMMITTED to the no iPads, Kindles, Fires, whatever decision. That was a hard thing. Do you know how many thousands of stickers we’ve gone through while waiting for food in public instead of playing a game online? Do you know how many packs of bugs I’ve bought at the Dollar Tree to open up in Dr. waiting rooms instead of putting the kindle on the charger? I likely could have avoided a lot of meltdowns. Maybe I wouldn’t have had to leave abandoned carts in countless stores. Maybe I wouldn’t have almost died from embarrassment at the ENT, the Urgent Care, the audiologist, etc. This feels sanctimonious but I truly don’t mean for it to be…..I just wanted him to play. It is difficult going multiple and consecutive birthdays and holidays and watching your child stim instead of play with the toys people loved him enough to get him. So, if it required wifi, it wasn’t allowed. We played blocks, ball, cars, Potato Head, sensory bins, everything else. And eventually, his play skills were typically developing. He has imagination, he has innovation, he pretends, he engages in dramatic play setups……one of my favorite things to do is sit and watch him play because there was a time when it took massive amounts of hand over hand to stack 3 blocks. Now I’m picking him out Lego sets. He has zero interest in someone’s phone and all the interest in the world in someone’s ability to race monster trucks with him. But it took a year and half of hours on the floor with Little People instead of hours beside me on the couch with an iPad. I’m 100% supportive if your house uses devices. I’m not anti-electronics. In fact, I’m 100% certain Caleb learned his ABC’s from Youtube. But I give you this insight to paint a picture of how truly nonexistent our play skills used to be versus now, where Caleb’s interests are 100% appropriate for his chronological age. This means so much to me because I can not have a conversation with my son via traditional means. Even with AAC, he’s not yet able to tell me about his day or how he is feeling…..but we can play together.

I take Caleb a lot of places. You probably see pictures here, on my personal Facebook, on Instagram, etc. And you see the smiles and successes. I don’t post that at Touch-a-Truck we had a meltdown about getting off the ambulance that resulted in my ponytail being pulled out. Or that last time we went to Fenderz we had to walk laps around the building until the food was ready. Or that at the Transportation Museum a little kid blew hateful raspberries at Caleb because he yanked train tracks out of his hands. Or that no matter the museum, zoo, festival, or fair we go to…and no matter how OVERALL well he does at these places, there is ALWAYS at least one instance of him being the loudest kid up in the joint for at least a hot second. But we go. Every Saturday, we go. And we stay. We may bail on carts of Christmas lights at Lowes, but we always stay at these events. And whatever rough patch we have, it’s always overshadowed by something amazing that he did that day. Like when we finally stopped yelling whenever he had to get off of a truck and move on to the next one. Or learning that the fries at Fenderz are most certainly worth the wait. Or getting over our run-in with the kid about train tracks and making it to the rail yard to climb actual trains. And if he doesn’t get out and experience things, how will we know what to foster in him? I’ve spoken before of his love for aviaries. If I had to have put $ on it before our first trip to the zoo, I would have assumed he would hate them. Now we’re building one on the property. My favorite Temple Grandin quote is this:

“Kids have to be exposed to different things to develop. A child’s not going to find out he likes to play a musical instrument if you never expose him to it.”

Thanks, Temple. You’re why we have a keyboard, a guitar, drums, and a harmonica upstairs, soul sister.

It would be easy to care more about home decorating than making my home a sensory friendly environment. It would be easier to buy apps than action figures. I would love nothing more than to spend Saturdays on the couch in pajamas. But if we don’t go anywhere, we’ll never get where we want to be. Literally and figuratively.

So, if you ever wanna road trip to a children’s/science/transportation/history museum with me at the crack of dawn on a Saturday, throw on your best yoga pants and grab a large coffee for the both of us and I’ll meet you there. I’ll bring the sticker books 😉

Love and Autism,

Erin

The Decision to Pursue AAC

I got a new car in April that came with 3 months free of XM radio which I’ve been listening to exclusively as I have a guilty pleasure sort of love for bad pop songs. King of guilty pleasure pop songs? Justin Bieber. Duh.

I’ve read enough Buzz Feed pop culture lists to know he’s turned out to be kind of a punk. (Did I just lose some die hard Beliebers as followers? It’s a blog. I say what I want). BUT….ever since “Baby, baby, baby, oh” came out I’ve been hooked on the kid, I’m not gonna lie.

So he’s got this song out called “Despacito.” I don’t know what that means but I know I’m obsessed with the song anyways (please don’t hold it against me as I would like to give the disclaimer that I have NOT looked up the English translation to the lyrics but DO know I can get down with that beat down). I’m listening to it and because I’m a mom and everything in one twisted way or another makes me think of my kids…I automatically start bawling on the way to work and crying out loud that “Caleb is never going to speak Spanish.”

What? What WAS that? Who DOES that? For whatever reason, when The Biebs started singing Despacito in Spanish, I became so incredibly sad because I had this defeat flash before me that Caleb would never sing whatever inappropriate lyrics he was singing in a foreign language. Ok, ok, I know my meltdown is clearly representative of a bigger picture- a picture that when painted looks something like I don’t feel as confident about our verbal prognosis as I did this time last year. Because now we’re almost four…..and we do not have language that is functional enough to be utilized without any other communication modality in conjunction. And if we barely have English, and I don’t know when we’ll get it, is there the potential for us to ever have anything else with it?

I remember when I was pregnant with Caleb I was visiting my best friend in Alabama who was pregnant at the same time with her daughter. There was a very distinct conversation I remember having at this fair trade coffee shop over bagels and lattes about how I wanted Caleb to learn Mandarin because no matter what life and educational decisions he made, he could always make bank being hired as a consultant to business firms, banks, etc. interpreting for Hong Kong businessmen affiliates. She called me out on my Tiger Mom moment, told me I was cray- cause I was- and I hadn’t thought about it in years.

Until Despacito. I think what has been happening lately is that I’ve become resentful. Not towards Autism- I found acceptance awhile ago with that. But I maybe have been having a pity party about the fact that this incredibly intelligent, affectionate child not only has a developmental disorder that severely impairs his verbal communication but he ALSO has a neurologically based motor planning speech disorder so even when Autism wants to stand down sometimes and give this child his voice, Apraxia pops up all “Hold my beer- I’ll see about this…” and makes it almost physically impossible for my child to speak.

The pediatric speech pathologist who has the quietest kid on the block. The irony is painful.

Ok….even after that angry outburst and “woe is me” moment…I still have a good handle on optimism and acknowledgement of the fact that he is too young for me to know what he’ll be doing a decade from now. My highest of hopes is that he’ll be reading this and say “Mom, you’ve always been a spaz, haven’t you?” and that he’ll say it in whatever language he dang well chooses. But, until we get there- until we reach the point of crooning to young ladies on the other side of the mountain by singing an acoustic cover of Despacito (which will be on the oldies station)- we’re going to let a communication app help us tell our story. Because this kid has too much to say to not have functional access to a voice- even if it’s a modulated one for now. And he can’t be denied the right to that because I’m a crazy lady who cries about if he’s gonna be conducting international business deals in China or not. Like…really, Erin?

But, there it is for you. An open and honest (and partially irrational) Autism fear laid out for you. I know you have them too. And I promise you- whatever it is- you’ll get zero judgement here about it.

And Justin- if all the moons and stars collide and the universe sends this your way and you one day find yourself reading this, know that you helped me help my son find his way in the world for now. Because that day your song came on my trial XM, during a peaceful morning drive into Patrick County where I was the only one on the road, my heart opened up enough to realize the decision I needed to make for my son. 3 minutes and 49 seconds of your pop hit made me certain that it was time for AAC. And helped me remember to take my own advice and remember that there is no defeat when we redefine our expectations.

Caleb- if it’s 10 years from now, I hope you’re reading this in whatever communication modality you’ve found works best for you and that you’ve grown up to be whatever you want. Except for Justin Bieber. If you’re gonna be a Justin, Timberlake is 100% the way to go. 😉

Love and Autism,

Erin

Apraxia and Autism: Where to Start

Because I think I’m generally hilarious, I decided that an unofficial subcategory of “Take That, Autism!” shall be “In Your Face, Apraxia!” because we’ve got more than one challenge on our plate.

I’ve talked to you about what Childhood Apraxia of Speech is and incidence rates of it in children with Autism here. Now, I want to tell you about what we’ve been working on and how to prepare ourselves for “true” intervention for apraxia.

Caleb says so many things that aren’t jargon, but true productions that are just that unintelligible. Because apraxia. Apraxia makes vowels beastly to form, consonants the trickiest of the tricksters, and then when you go to put those Consonants and Vowels into various CV, VC, CVCV, CVC, etc. sound combinations it all can become a very “say what?” situation. And that’s when you’re able to imitate things verbally on a 1:1 compliant ratio. But what about when you have Autism and are 3 and your verbal skills are just starting to develop and your ratio of imitating a single word is more of a 20:1 input/output ratio? And that’s just to maybe label…..NOT to produce specific sounds in specific sound patterns.

But your child wants to try. You can tell. They want to try to say more things. Where do you start? Here’s where we’re at.

Imitation Hierarchy

There are sooooo many things kids imitate before they imitate at the word level. Here’s the breakdown:

– Gross Motor Movements (jumping, kicking, etc. and then expanding to movements with objects such as rolling cars)

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Fine Motor Movements (clapping, motions to songs, playing with small objects and tools, etc.)

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– Oral Motor Movements (blowing, sticking out tongue, kisses, etc.)

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– Imitation of nonsense or environmental sounds (moo, vroom, etc.)

– Imitation of single sounds and simple words

I could not expect Caleb to say “car” if he wasn’t rolling a car across the floor or knew that it went “vroom.” And this hierarchy is not profound. It’s typical language development, really. The difference is that in typically developing kids, the first 4 steps usually don’t need to be “taught”. You probably don’t know when your child started imitating actions, play, animal sounds, etc. because they just kind of did it. Everything with Autism takes more work , more time, and a lot of times formal intervention to learn. Caleb did not imitate rolling a ball. It was taught. He didn’t start imitating motions to songs until last summer right before he turned 3. And it took a lot of watching YouTube song videos and hand-over-hand until he knew his own head, shoulders, knees, and toes. You can’t just look at Caleb and say “stick out your tongue”. It has to be this very elaborate back and forth in front of a mirror where ridiculous faces are made and you will ultimately end up getting lizard licked. Right now we’re teeter tottering between imitating nonsense sounds, single sounds, and 1 syllable words. Caleb can do some solid “ahhhhhhh”, “eeeeeee”, “oooooo” imitations to practice vowels and early developing consonants are coming through, but we are not ready to imitate sounds at the word level. We’ll get there, but it’s a marathon, not a sprint.

I wanted to review a solid imitation hierarchy because when we have 4, 5, 6, year olds who are not yet talking it can be very instinctive to just throw words at them and hope they stick. But imitation of movements, actions, and sounds are a crucial part of development. And if those skills didn’t develop, they need to go back and be addressed and facilitated. That does not mean; however, that you should not work on talking about all of the things all of the time. While you’re working on learning actions, talk about them. When you’re playing trucks, make truck sounds. You’ll get some back sometimes and that’s awesome. You don’t want to walk before you crawl. And I know parents get jazzed and bragged “my child didn’t crawl, they went straight to walking and walk just fine!” but I promise you don’t want that. Yes, maybe they’re walking now but if they never learned that crawling step, there could be implications one day of never having learned the proper skills needed for appropriate visual-spatial recognition, motor coordination leading to good handwriting, and a host of other things (which is a whole other post for a whole other day). Same principle applies here. Imitating actions contributes to increased attention to task, appropriate play development, improved eye contact and social interaction, etc. Do you want to skip straight to talking and skip all those other important developmental milestones? Probably not. No matter what your child’s age, it’s never too late to go back and start working on those skills.

Please stay tuned for future updates on Caleb and our Apraxia-Autism interventions (that will challenge mommy’s creativity and ingenuity) as we find the strategies and approaches that he’s going to respond best to. Thanks for being a part of our journey.

Love, Autism, and Apraxia, everybody. Here’s to the feeling of satisfaction we’ll have when we end up where we’re going to end up and the patience for us to hold on tight until we do.

Erin

Apraxia of Speech: Defining and Describing the Disorder

It’s Saturday night, it’s getting late (in Mom world at least), I’ve been taking care of two sick kiddos all day, but I just wanted to introduce a topic I’ll be talking about a lot coming up because it’s something we’re starting to work on everyday: Apraxia of Speech.

What is Apraxia?

It’s a motor speech disorder. What’s that? Speaking feels so natural but is actually a very intricate and complex process. A motor speech disorder means there’s difficulty with the motor planning part of moving your tongue, lips, etc. to execute the necessary sounds in the consonant-vowel combinations they need to be in to produce a target word. The words are in the child’s head, but the articulators have a hard time executing the movements to make those words.

What does Apraxia look like?

Here are some of the more common signs and symptoms:

  • delayed acquisition of speech/language milestones
  • very limited inventory of consonants or vowels a child is able to produce
  • difficulty producing multi-syllable words
  • atypical sound error substitutions and inconsistent use of those substitutions. Example: Most kids who can’t produce a /g/, substitute it with a /d/. That would be a typical substitution. If they make that /d/ instead of the /g/ every time, that’s a consistent error. If they can’t produce a /g/, but sometimes produce an /l/ or another sound or sometimes completely omit the target, those are atypical and inconsistent errors which are more concerning.
  • gap between receptive versus expressive language abilities, meaning a child can understand much more than they are able to express verbally
  • Groping: abnormal movements of the lips or tongue that make a child appear to be physically struggling to verbalize something
  • difficulties (sometimes extreme) with intelligibility

Is there a relation between Autism and Apraxia?

I am not a doctor, so I will just tell you some research statistics here. There is research that has come out in recent years that indicates a higher incidence rate of Apraxia of Speech in children with Autism Spectrum Disorder. That does not mean that having Autism means you have Apraxia or that Autism causes Apraxia. It just means that when you isolate a population of children who have Autism and another population of children who are otherwise typically developing, the group of children with Autism may have more children who have a true diagnosis of Apraxia versus the typically developing group. Dr. Cheryl Tierney, M.D. published a paper in the Journal of Developmental and Behavioral Pediatrics in 2015 that found that 64% of children who had a diagnosis of Autism Spectrum Disorder in her clinic also met the diagnostic criterion for Apraxia of Speech.

Do I have a two cents on it? You know it. I always thought….even before I zeroed in conclusively on Autism…..that Caleb may have Apraxia. He was really young and it’s so difficult to label accurately at that age, but I like to think that I am very good at my job and that I know my child very well, so it most definitely was brought up to my colleagues and his pediatrician as a possibility. Now that he is becoming more verbal on a daily basis, the fact that he is having such  a hard time coordinating that little mouth to say what I ask him to say is glaring to say the least, really.

There’s lots more I can go into about how Apraxia of Speech can be addressed therapeutically, the importance of tactile cues, etc…..but I’d be here all night and it would be overwhelming. What I would like to leave you with is the first step of what you should do if anything that you read above alerts you to red flags in your child: talk to your child’s doctor and get a script for a referral to a speech therapist. Therapeutically, for myself as a professional, it’s very important to me to determine if a child does in fact have Apraxia of Speech because whether or not it is present will absolutely dictate how we go about intervention and the order that I pick targets to work on. 

Here are some things that I WILL leave you with though!:

  • Check out some infographics and links to articles on the “Take That, Autism!” Apraxia Pinterest Board.
  • “Take That, Autism!” also has a YouTube channel now! Here are some links to a couple videos of Caleb so you can hear an example of severe apraxia. Listen for the decreased use of consonants, extreme difficulty with anything more than one syllable, limited intelligibility, etc. Some attempts sound like babble or just a vocalization as a place marker but hey…..we’re getting there. And one day, with the most intelligible speech he can muster up, Caleb’s gonna post a video on YouTube hollering “Take That, Apraxia!” Here are the links:
  • Don’t forget to follow us on Instagram @take_that_autism. Caleb has a sweet video that’s a good example of his speech abilities while he “reads” The Very Hungry Caterpillar on there.

Let me know if you have any questions! Catch me at ErinSamsell@takethatautism.org

 

 

Clothing Vocabulary Activities

On Sunday we talked a little about self-dressing and I gave you some links to help troubleshoot any dressing difficulties that your child may have. I also talked about Caleb’s need for some work on clothing vocabulary as he ran around trying to put his sister’s pants on as a shirt.

So, after getting my Pinterest on, I made a fun activity that we’re going to test run today that targets expressive/receptive language skills and fine motor fun. (Oh yes- fine motor exercises are most def FUN!).

Here’s what I made to help Caleb out (the idea for which I straight up copied from Pinterest ;)):

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Here’s what you need:

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– Mini clothespins (less than $2 in the craft aisle at Wal-Mart)

– Box of any kind- plastic container, shoe box, etc. The one I used came with some plastic food toys that the kids got.

*Insider Tip: We love Melissa and Doug toys in this house. Most of them come in nice wooden boxes. I don’t keep the toys in them because there are no lids but always save the wooden boxes….one would be perfect for this.

– Sticks. For real. I was gonna go outside and take some from the yard but then found wooden dowels in the craft section that happened to be the perfect height for my clothesline for a whopping 74 cents (still Wal-Mart) so since it was even less effort than going outside, I went with that.

– Parachute cord. $2ish dollars. Again, craft aisle at Wal-Mart.

– Craft felt. I got a pack of 12 for $2.88 but you can buy individual sheets for 23 cents if you’d rather. You could also use construction paper but it won’t be as durable. (Can you guess where I got it?)

Clearly I need to give a shout-out to the Stuart, VA Wal-Mart.

Assembly is pretty straight forward. I didn’t even bother with glue and legit just taped the dowels to the box.

Cut and tied parachute cord.

Drew and cut clothing.

Added clothespins.

Easiest activity ever.

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Here’s how you can use it!

Receptive Language: identifying colors, identifying clothing items, identifying prepositions (in the box, on the line, overunderbeside/next to), identifying size and comparatives (get the big/small shirt, find the longest dress), body part vocabulary to identify where each article of clothing belongs, and following directions (1,2,3, however many steps!).

Expressive Language:  labeling colors, clothing items, and all the prepositions and descriptive concepts I mentioned above.  Also responding to “where” questions to identify where we wear each item. And don’t forget requesting (I want the _____), and commenting.

Fine Motor Skills:  hand strengthening by pinching the clothespins open. These are small so it won’t take much effort to open them but try hanging up some yarn across some dining room chairs and have your little one practice hanging up actual clothes with regular sized clothespins. Strengthening the muscles in the thumb and pointer finger will help get ready for writing!

And a million other things, certainly, but this is an awesome place to start!

We have something else planned to entertain ourselves with today, also. Monday I posted on the Facebook page that I found a sweet clothing game for $3 in the bins where you first enter the store at Target. I broke it out last night to see how I could adapt it to a 3-year-old with special needs and was pleased to realize that very little would need adapting. Here’s what your $3 investment will get you:

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– 36 pairs of brightly colored underpants

– 4 laundry trays

  • – a stand-up washing machine
  • Also, I was anticipating that since the game was so cheap, that I’d need to laminate flimsy pieces but everything is made of really sturdy cardboard so it’s good-to-go.

Here’s how to use it:

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You turn all the underpants over and then randomly select them to fill up your tray (or you could skip that step and just put some on your child’s tray). Spin the spinner and if you have that color underpants, you get to put them through the washing machine. If you land on the bubbles, you get to holler out “WASH MY UNDERPANTS!” and the player has to fill back up their tray from the washing machine’s stash. I think Caleb will need me to make him a visual for what to do when he sees the spinner on the bubbles. If anyone is interested, I can upload what I come up with! Just let me know.

What you’re targeting:

Receptive Language: identifying and matching colors, following directions, identifying quantity concepts (who has more/less/most/least)

Expressive Language: labeling colors, labeling quantity vocabulary, commenting/requesting, pronouns for my/your turn

Pragmatic Skills:  waiting for someone else’s turn, impulse control, being a good sport

Fine Motor: pincer grasp to get the underpants off the tray and into the washing machine (no OT cheating by sliding them off to the edge of the table!), strengthening/coordination spinning the spinner

That’s a lot ya’ll could accomplish for just $3!!!!!

Don’t forget to check out my Pinterest boards for more Clothing and Body Part Vocabulary ideas as well as more Fine Motor Activities to do with Clothespins!

Before I go, if anyone has even the slightest interest in doing either of the above activities and would like a communication board made to use if your child is pre-verbal, I’d be HAPPY to make one and post it.

Thanks, everybody!