Childhood Apraxia of Speech: What the hell is that?

About three and half years ago, my son was diagnosed with "verbal dyspraxia." The speech therapist we were seeing at the time was lackluster, to say the least. She drilled with my then 4-year-old over and over again. She had no personality, she didn't even try to engage with him, and she never even considered adapting her methods to fit his needs.

I used to have to drag him--literally--to those appointments. After six months of that, I got fed up, to say the least. So I fired her. To find a new speech therapist, I turned to the place we all turn these days, the Internet, for guidance. I was (and still am) part of some awesome mom-to-mom groups, both local and national, that address kids with severe speech delays, specifically verbal dyspraxia, or as it's more commonly known, Childhood Apraxia of Speech (typically shortened to either CAS or just apraxia).

When Jack was first diagnosed, I went into denial mode first. "Oh, it's not really that; his scores were borderline. He just needs a diagnosis so insurance will cover."

But denial or not, he needed speech therapy, so I got a recommendation from one of those local mom-to-mom groups and found the best SLP we've ever worked with (and there have been several).

She confirmed the diagnosis of apraxia, and I think that was when I started to actually believe it.

So the question is what is apraxia?

Apraxia is a neurological disorder that effects the complex motor planning that produces speech. Let's break that down, shall we? Neurological refers to the way the brain functions. Motor planning is the response of the muscles to the brain (so the brain says, "Hey, arm, lift up and wave around," and your muscles are all, "Yeah, okay, we can do that." And, bam, your arm is in the air.) And speech is spoken communication (note: speech is separate from language).

So put that all together and what do you get? Apraxia is a disorder in which the brain is unable to properly control and direct the muscles of the tongue, jaw and mouth; the result is a reduced ability to communicate verbally.

Apraxia is one of those odd disorders that is marked by inconsistency. One of the things I remember hearing early is that the speech pattern errors Jack was making were "consistently inconsistent." So he'd always make errors in a sound he was trying to produce, but they weren't always the same errors. They also sometimes gain words and then lose them again. For example, once when he was about 2, he said the word "apple" perfectly and in context (my husband was eating an apple). He never said it again until after age 4 when we started with our current SLP.

Defining CAS can be difficult. Our first SLP (who was also pretty awesome) suspected it after she started working with Jack, but he was too young to make a diagnosis at that point. Why does age matter? Because some of the speech pattern errors that mark apraxia are also age appropriate in a very young child. If a child ages, but his or her speech does not advance, then it might be a marker of CAS. But there are other, more complex, speech errors that mark the disorder as well. For example, sequencing is really hard for CAS kids. Sequencing is exactly what it sounds like...the order of sounds. Think about a word many kids mispronounce when they are little...'spaghetti' comes to mind. Many kids will say something like 'pasghetti' because the sounds are hard for their little brains to sequence, to put in the right order. But they grow out of it. CAS kids don't grow out of it without specific, targeted speech therapy. (Side note: It's highly unlikely that a CAS kid would have all the sounds required to say "spaghetti" at a young age anyway. [Side side note: As a test, I just asked Jack to say "spaghetti," he dropped the /p/. It took him three times to get it close enough to right.])

These are just a few examples of why CAS is difficult to diagnose. One, the errors are inconsistent; two, at young ages, they can mimic typical speech development. Not to mention, not all SLPs are created equal (a theme this post keeps coming back to). Many of them don't have the necessary training to properly diagnose, let alone treat, CAS.

As in my previous posts, I feel the need to include a disclaimer: I am NOT an SLP. If you think your child may have a speech delay or disorder that requires therapy to overcome, find yourself an SLP. If your kiddo is under 3, start with Birth to Three; sometimes also called Early Intervention. You do not need a doctor's recommendation to call. Parental concern is all you need. If your child is in a school system, you can get speech services through the school. You'll need an IEP and you'll need to be a strong, forceful advocate for your kid. Apraxia needs a very specific type of therapy and it needs to adapt. It's not one size fits all. In addition, if you suspect CAS, click on over to CASANA to get some basic starting information.

It's been a long hard road to get Jack's speech to where it is now. Now he's understandable almost all of the time, but it's clear pretty quickly to anyone who listens to him that he has a speech disorder. So even though it's greatly improved and he's intelligible, there's still no hiding his apraxia. And we still see that same fantastic speech therapist three times a week.

As I said above, not all speech therapists are created equally. Ours is well-versed in apraxia. She keeps herself up to date with webinars, conferences and the latest research. Whenever she finds something that she thinks will help my son, she implements it immediately. If it doesn't work, she ditches the approach. She uses evidence-based approaches, but also recognizes that Jack is a unique individual and what works with one apraxic kid won't necessarily work with another.

(As a side note, here's something funny. He's turning into a little speech therapist on his own. I just heard him correct his brother's pronunciation of the word "them." He said, "It's them, with a /th/ not dem.")

From our very first visit, Jack's speech therapist met him where he was instead of demanding he met her expectations. So when he was shy and wanted to get down on the floor to play, she got down on the floor with him. When she sees that he's a little extra sensory seeking, she provides games that include movement or other sensory input. She has constantly adapted her approach to keep up with his changing needs. In other words, she takes a child-centered approach that ultimately leads to him having fun while doing work. And it is work.

Imagine the thing that's hardest in the world for you. Now imagine you have a one-on-one class three times a week to help you improve that hardest thing. It's a pretty demanding thing to ask of a 7-year-old. But time and again, they come out of the session and the SLP tells me, "He did great!" And he does great because she helps him do great.

There is a chance that his apraxia will never fully resolve. He may always speak with an impairment. But that doesn't mean that it will hold him back. He's smart, funny, kind and so full of life and energy. He's an amazing kid, and I'm so lucky to be on his team.

Sensory Diet: Feeding the Vestibular System

So last post, I talked about the importance of proprioceptive input for sensory seeking kiddos. Proprioceptive input feeds your kiddo's need for body awareness. So everything from lifting a heavy book, box or even weight to jumping up and down will help kids feed this particular sense.

One other type of feedback I try to make sure my son gets on a daily basis is vestibular input. Now this time of year (February in Connecticut), it can be a little challenging to get him this type of input. That's because this sense is fed through big movements like swinging, spinning, hanging upside on monkey bars...you know, the kind of stuff I can totally set up in my tiny cramped, I mean, cozy house.

So just as a disclaimer to this post and the previous one--I am no OT. I get my information from the OT my son sees, plus books I read about sensory seeking/defensive kids and of course, Google searches. If you think your child struggles with any of these types of sensory issues, I highly recommend finding an OT and getting an evaluation done.

That bit of official business aside, let's answer the question, what is the vestibular system?

Sensory information about motion, equilibrium and spatial orientation is provided by the vestibular apparatus (VEDA--Life Rebalanced)

Super helpful, right?

Basically, when you turn your head, the fluid in your middle and inner ear sloshes around. Through the intricate and beautiful system that is the human body, the movement is detected, and the body reacts (hopefully) appropriately, allowing you to maintain balance, equilibrium and spatial orientation, as stated above. This happens with almost any movement. So in kids who crave that extra sensory input, movements that really activate that fluid are helpful.

Movements that can help feed the vestibular system:

• Swinging
• Spinning (on a swing or office chair)
• Biking
• Rolling (like on a therapy ball)
• Sledding
• Turning cartwheels or somersaults
• Hanging upside down

What's really great for kids is to do one of these types of movements and then stop and be still. This helps the vestibular system to integrate all the input it just received. Think about how that final pose in yoga (savasana aka corpse pose) helps your body integrate all that great stretching and work your body just did. Movement followed by stillness helps bring it all together. 

So how do you know if your child has trouble with his or her vestibular system? Does your child...

• Have a constant need for movement?
• Seem impulsive, maybe even aggressive?
• Like to be upside down while doing sitting still activities (reading, watching TV, etc)?
• Prefer running to walking?
• Not get as dizzy as you would expect after spinning?

A lot of these signs are the same as a child seeking proprioceptive input. Some kids are sensory seeking (like mine--which is why I focus on this type of behavior), but some are sensory avoiding. If your child is the complete opposite of the above list, then he or she might be sensory avoiding.

There are a few things to remember when putting your child on a sensory diet. First, remember to follow his or her lead. Encourage your child to engage in these activities so that his senses are fed, but don't push them. Second, a child who is sensory seeking one day might be sensory defensive the next. Kids fluctuate with their needs. Adults tend to want kids to be stable, but they just aren't, and it's our job to help them navigate what feels like an ever-changing landscape, not to try to stuff them into the mold we want or need from them. Finally, remember to have fun. These are activities that most kids enjoy and that we all probably enjoyed when we were kids. So swing with your kid, take a bike ride together, race them down a hill--in a sled, or just rolling. Don't worry about the grass stains, and don't worry about the judgement of others. 

Again, I am not an OT. I'm just a mom with a sensory seeking kiddo, so I try my hardest to understand what he needs. It's been a long drawn out battle for me to understand his needs and work harder to anticipate them before they manifest as disruptive behavior. Seek out an OT or trained professional if you think your kiddo's "bad" behavior might be tied to some bigger issue.

Sensory Diet: Proprioceptive Input

One of the things I try to work on with my son is feeding his senses. He is a sensory seeker. What does that mean?

Hiking is another great way to feed a lot of senses: the cool winter air, the sound of the leaves rustling, the sight of the branches blowing in the breeze...plus the proprioceptive input of constant movement. 

It means:

• he has a high need to touch and be touched
• he needs to move...a lot
• he likes to feel stuff against his body

We all know about our five senses: hearing, touch, taste, smell and sight, but did you know there are actually other senses as well?

Specifically, there are the senses that take in proprioceptive and vestibular input. Those are some big, fancy words, and I didn't come across them all on my own. My son sees a wonderful occupational therapist (OT) who helps him and teaches me how to help him. So what do those big words mean?

Proprioception refers to how we feel our bodies in relation to the space around us. It's why you can close your eyes and touch your finger to your nose (usually...put the wine down!). You can think of proprioception as body awareness, a sense of yourself in relation to the people around you and the objects in the room. It's why we don't walk into walls or bump into furniture.

My son has a high need to feed this sense. It's the reason that when I sit on the couch next to him, he immediately zips himself to my side like we are made of Velcro. It's the reason he loves to snuggle with his grandmother, and it's the reason he doesn't just walk over and sit on the couch, he runs to it and throws himself against it. 

Now that I recognize his need for this type of input, I try to feed it when I see him seeking out his own proprioceptive input. So when he starts throwing himself against the couch, I'll say, 

"Hey, Jack...let's:

• do some frog hops
• walk like a crab
• jump off the couch
• do a wheelbarrow walk

These are just some examples of how to feed that sense of proprioception. I also take him to bounce houses places or trampoline parks. These places are great for winter time proprioceptive input. In the summer, all we need is a park. Running, jumping, hanging from monkey bars, playing tag with friends. All of those feed that same sense.

In addition, Jack likes to touch things. So a soft blanket gets rubbed against cheek, he held a quartz crystal during his last chiropractic appointment and he really liked touching its cool, smooth surface. He uses a weighted blanket at night made of soft fleece with a silky edge. He pets my hair.

He also constantly chews things, and while I admonish him over and over again to stop chewing on his clothes and offer the silicone chewy bead necklaces he has, I haven't had luck discouraging that particular habit. We are both works in progress.  

Obviously, all kids have a need for these activities and I've never met a mom who didn't have a better day after her kids were able to release energy in these ways. Plus these are all forms of basic exercise, so they are super important for any kid to learn how to be healthy and fit. We should all encourage our kids to run around in the sunshine and fresh air or jump at the trampoline part. But when you have a sensory seeker, you know the difference between a regular kid who needs to run around and play and your kid who needs just that extra bit of everything.

This post ended up being longer than I anticipated...so check back in a day or two for a follow-up on what vestibular input is all about. 

One of the best things about a sensory diet is that it feeds your little seekers senses before they have that strong need...the need that might manifest in rambunctious, disruptive behavior. Basically it amounts to the old adage...an ounce of prevention is worth a pound of cure. 

Restarting the Blog (Again)

It's been a long time since I've written a blog post. I navigated away from traditional blogging and went to quick and dirty Facebook posts, managing the page through that platform. And then I slacked off on that, too. I switched to Facebook mostly because of time restraints. I had two little kids and a part time job, not to mention a house to manage and a million other responsibilities. So writing a quick little status update was much easier than writing out a post, with like paragraphs and organization and shit. But then apparently, life got too busy even for Facebook posts.

But now I'm looking to hone my writing skills and possibly make some money with a freelance writing career. To that end, this blog will become my space to practice writing about any topic that I feel like writing about!

Plus I quit my job and returned to teaching just one class, and while teaching is generally more work, I'm hoping that since it's less time out of the house, I can recommit to writing about things that I care about and things that interest me.

So I hope to continue writing about crafty topics, and maybe I'll be able to throw in some travel posts, too. If anyone has any suggestions for interesting topics, I'm listening!

If you read, great! If not, that's cool, too.

So expect blog posts on random topics as I try to, as they say, niche myself down.

Here's to writing!

He Can Do It, I Can Help!



My four-year-old has a speech delay.  Anyone who know us, knows this.  Jack’s speech can’t be hidden, partially because for an unintelligible kid, he sure talks a lot.  But as soon as he starts talking, people realize they can’t understand him.  So of course, they look to me to translate.  I usually can, and do, but there are times when even I (with my Mommy superpowers) can’t understand him.  Those are the times that break my heart.

So lately, I’ve been working really hard on doing speech development activities at home.  He is in speech therapy, but once a week for 30 minutes is a drop in the barrel, so I find myself working harder and harder at designing games we can play together.  My cousin, a speech language pathologist, mentioned that he may have trouble with phonological awareness.  So I’ve been educating myself on what exactly that means. 

In that research, I came across this little snippet:

Acquiring phonemic awareness is important because it is the foundation for spelling and word recognition skills. Phonemic awareness is one of the best predictors of how well children will learn to read during the first two years of school instruction.

--Reading Rockets

I read that and immediately felt freaked out that Jack will always struggle with words, sounds, and by extension, reading.  I took off my glasses, closed my eyes and rubbed my fingers over the bridge of my nose.  I took a deep breath and told myself that even if he does struggle to read, it’s okay.  It doesn’t make him stupid or slow.  It just means he has challenges.  And I feel equipped to help him meet those challenges.

And then, suddenly, I felt thankful that I’ve been given this awesome kid who forces me to raise my game as a parent.  Sure, I could wish for everything to be easy, but that’s not Jack.  And he is going to help me learn so much about the world and myself.  Is that corny?  Maybe, but it feels a lot better to embrace him as a whole child rather than constantly trying to address speech as a separate problem.  It’s not a problem…he’s not defective…he just has to work harder than a lot of other people to reach the same goal. 

Hopefully that’s a lesson he brings into the future with him.  After all, there’s nothing wrong with a little hard work, right?

And while I know all that is true, and I know he’ll speak properly someday, when I start reading articles that begin with “Does your child have a speech delay?” I nearly start crying.  Every.Time.  Even though I know the answer and have known it for nearly 3 years.  I still want to cry every time I start at the beginning of new reading materials on how to approach a speech delay.

I think it’s why I often skip right over the beginning stuff and plow into the “what to do about it” materials.  If I can DO things, I don’t have to feel helpless.  And lately, I want to DO everything I see that applies to speech therapy.

If you think your child might have a speech or other developmental delay that may require intervention, you can call Birth to Three yourself...you don't need a doctor's recommendation.  And if your child is over the age of 3, talk to his or her doctor.  Follow your gut...Mama's instincts are almost always right!

Catching Up

Hello, readers....if I still have any.  I mostly took the summer off from writing because it's hard to write with two little ones around and by the time the evening rolls around, I'm much too tired to do anything other than zone out.  On the rare night I'm left with some energy, I'm trying to use it by furthering my and my sister's little Etsy shop. 

But now the semester has started and so I can blog again!  (Don't tell my boss)

So I thought I'd do a little run down on where I stand with all my homemade crap...I mean, stuff. 

Shampoo: No 'poo did not work for me.  I tried the baking soda and vinegar and my scalp was not happy.  So I tried a castile based shampoo and my scalp still was not happy.  I've been back to regular shampoo for a while now, but I think I want to give the natural stuff another try.  Plus I've chopped all my hair off, so I'm curious to see if that effects how my hair and scalp react to a natural shampoo routine. 



Before...as my sister pointed out...I could have cracked a smile.

After...all smiles!

Toothpaste: This one was still a work in progress when we started remodeling the bathroom.  As a result of the remodel, I was lucky if I could find my toothbrush much less make and store all natural toothpaste.  Now that most of that chaos is behind us, I'm going to try again to finalize a new toothpaste recipe that will keep fluoride and other yuckies out of my mouth. 

Lotions and potions: I'm not big on make-up (I wear a little powder foundation and eye-liner when I go to work, and that's about it), so I haven't worked too hard to find or make alternatives to conventional make-up.  And while I did make a body butter that I liked, it got shoved aside during the bathroom remodel and as a result, I didn't really use it.  But my super awesome mother-in-law made me several body butters and sugar scrubs and I flipping love them and use them daily!

Oil Cleansing Method: I haven't been doing this because I was too lazy to wash my face at night.  I bought some African black soap and I use that to wash my face in the morning, but I have been using the lemon body scrub that my mother-in-law made me nightly.  So I have been using a natural, homemade product on my face!

So the bottom line is, I kind of suck at follow through.  I have a tendency to start strong and then let things slide as life settles in.  But I'm hoping that getting back to work will give me a little more structure in my schedule and that will allow me to get back on track with these things!

I have been doing a stellar job on canning and preserving the summer harvest, but I'll leave that for another post!

Exciting Things in the Works!

The blog has been on a summer hiatus for a while.  I've been enjoying fun with my little boys, helping my sister in her garden and reaping the benefits of my mother in law's garden as well (sitting across from me as I type this is a 2 foot long zucchini...I kid you not).

But another thing I've been working on while I put the blog on the back burner is sewing!  A while back, I rekindled my love of sewing, and I recently decided to parlay that into a little side business.  This is a joint venture between me and my sister.

We are starting small, selling reusable snack and sandwich bags, but we hope to add bigger lunch totes and other types of bags as well as other accessories.  Eventually we'll have drink bottle holders, and possibly some fashion accessories too!

We're very excited (and only slightly terrified) of this new venture!  Please support our business if you are in the market for these types of items!

Here is our shop.

And here is a sampling of our modest inventory.

The first two sets are lined with rip-stop nylon for a bit of water resistance.  The last one (the striped one) is lined with cotton.  All are closed with hook-and-loop closure (aka Velcro).

This is a perfect time of year to purchase these types of items with the start of school around the corner.  In the long run, reusable snack and sandwich bags will save money, not to mention the environment!

We will be running a grand opening sale...All items are 20% the listed price and your first order will qualify for free shipping!  Now is the time to order!!

Pickles!

Canning season is here!  I'm super excited (or at least, I'm gonna fake it til I make it).  This is my first summer as a canner.  Last year, my sister and I learned how to can at the of the summer, so we missed most of summer's bounty.

There are a lot of moving parts when it comes to canning.  First and foremost, you need a trusted recipe and you need to follow that recipe to the letter.  I am the kind of person who never met a recipe she didn't tweak, but when it comes to canning, NO TWEAKING ALLOWED.  Second, you need a canner.  Most people start with water bath canning before progressing to pressure canning.  I actually use an old stock pot that is literally big enough for me to climb into.  Other tools that will help are a funnel, a head-space measure, a jar grabber, and a magnet.  The only one of those things that I have is a jar grabber.

The complexity of the canning process is entirely dependent on what you are canning.  Pickles are a super easy "intro to canning."

Last weekend, my mother-in-law invited me over to pick veggies from her garden.  I walked away with 10 pounds of pickling cucumbers.  Over the course of the intervening week (between working on my bathroom and trying to fix a faulty sewing machine), I turned all those gorgeous cukes into pickles.

I used a recipe from SB Canning because her website is well-known and trusted.  I followed her recipe for dill pickles and canned 12 pints of pickles.

I had one guy who didn't want to seal, so I stuck it in the fridge.  I did some as spears and some as slices.  The only thing I changed was the spices.  Instead of adding each spice separately, I used a "pickling spice" from McCormick.

Trying to find the fuel

Here's a pickle.  I was sitting here thinking that I would write a post about how unfocused I've been lately, but I can't seem to focus on the words.  Ironic.

So here's my dilemma (a first world problem if there ever was one).  I have all this beautiful food coming in from my CSA and while I usually manage to eat or share everything before it spoils, I haven't been making full use of summer's bounty. 

I've been feeling unfocused, out of sorts, lazy.  We've been ordering out way too much...I find myself hitting the cafeteria and/or vending machine frequently here at work.  I don't know why I feel this way, but I think part of it is the lack of organization in my house.  Another part is a general lack of good sleep.  The first part I can do something about, but the second part is something only time can fix.  Eventually my children will grow and won't want to sleep with me (I hope). 

Of course, eating take out doesn't exactly fill my body with the right mix of nutrients to keep me going strong and when the food I eat makes me tired and lazy, then I don't want to cook good, healthy food and so we eat more convenience food, which perpetuates the cycle of feeling tired and lazy.

Last summer, I learned to can at the end of the season and I told myself that I would can everything as each season came this year.  But I've already missed strawberry season and if I keep allowing myself to be lazy, I'll miss everything.

I need to recommit myself to meal planning, canning and freezing the summer harvest and exercising to maximize what little energy I can muster.

Meanwhile, if anyone wants to come be my night nanny so mama can sleep a little, come on over.

Parents, Wake Up (an off topic post)

This post is off the topic of food and farms, but it's my blog so I can write about whatever I want. Every summer, I read stories that break my heart about children left in hot cars, where they roast--literally--and die.

For a long time, I--like many others--vilified these parents as evil at worst and bad parents at best. But then I read this article from the Washington Post and it changed my perspective. I saw how even the most devoted of parents could become distracted and forgetful. Especially when taking the kids to school or daycare wasn't a normal part of their routine. These parents had made a mistake, and don't we all make mistakes? Can't we all look at something we've done and say, there but by the grace of god do I still have my child? These parents made a terrible, awful mistake and paid the ultimate price for it. 

But this summer, my perspective is shifting again. There have been four recent incidents of kids left in cars in my state alone in the past two weeks. Thankfully they weren't all fatal, but they weren't all accidents either. Some of these parents intentionally left their kids in the car, and were called out on it. 

I can't say that I've never left my kids alone in the car. I have. But I've done it carefully and with close consideration of where we were at the time. I will only leave them alone in the car if I'm in a rural location where I know no one is likely to approach the car, and I can see the car at all times. I also let the baby take naps in the car. As every parent knows nothing puts the baby to sleep like riding the car. And not all babies make the transfer into the house successfully. So I park my car in the shade, roll down the windows, open the back doors and the trunk and let him sleep, checking on him every few minutes. Even with those safeguards, he usually wakes up fairly sweaty. 

My point is I'm not immune to leaving the kids in the car and walking away, but the difference is I've never forgotten that my children were in the car. The phenomenon of hot kids in cars is one that scares the pants off me and for that reason, I tend to be extra vigilant about these things. 

So back to the main point. This seems to be happening more than ever, or at least I seem to be hearing about it more and more. There is no longer any excuse. With headlines every week about babies in hot cars, kids dying in hot cars, parents being arrested for leaving kids in hot cars, there is no excuse for forgetting your child is in the car. 

People suggest doing things like leaving your purse or briefcase in the backseat, taking off a shoe and leaving it in the backseat, writing a note on on the window in dry erase marker or even using decals as a reminder. If that's what you need to do to remember your kid is in the car, then do it! Or make it a habit to look in the backseat every time you leave the car. 

The modern age is distracting, there is no doubt about that. But we cannot use technology as a distraction as an excuse for forgetting what's most important to us. If your phone is too much of a distraction, then turn it off leave it in that purse or briefcase in the backseat and don't get it until you get out of the car. 

What's more important? Answering that last text? Making an important phone call? Or getting your kid where he or she needs to be safely?

Parents, this job is hard. But stop making excuses and make your kids your priority. No more kids should die this way.