Doubt

Ava has been making progress quickly. It’s a blessing I am truly grateful for. However, an interesting side effect is that people (family, friends) are beginning to ask me if I perhaps over-reacted. Perhaps Ava is just a late talker after all. Perhaps she’ll catch up just like Michael did. Ava's swift progress combined with questions from others and the reluctance from other professionals to officially diagnose began to make me doubt myself.

So I went to our home videos. I wanted to compare Ava’s speech now (about two months after she first started making progress) to Michael’s speech at that same point – two months after he first started making progress. That would be when he was about 18-19 months old. It was interesting. Most of the time his speech sounded very much like Ava’s speech right now. He didn’t have any final consonants either. He was using mostly one word utterances. But, and this is a big but, when he did combine words he easily put two to three words together. Neither word sounded exactly like the adult version of the word, but they were combined easily and you could tell them apart. You could tell that he was saying two different words and combining them with no difficulty. That is a huge contrast with Ava. She has to work to try to combine words. When she tries they usually all come out the same. This is not typical.

Michael did not develop on a typical timeline, and his early history was atypical, but once things finally got started they followed a typical developmental pattern. That is a late talker. That is a delay, not a disorder. Ava is different. She needed therapy (and possibly fish oil supplementation) to get started. And now that things are started, the development does not look typical. This is disorder, not a delay. I don’t know yet what the future holds for her. The great progress so far gives me hope that her disorder (suspected CAS) is on the milder end of the spectrum. I am sure, however, that this is a disorder and not a delay. I am not over-reacting. I will continue to do everything in my power to help her. Both my professional and my mama instincts tell me that. And my research confirms it.

Fish Oil Supplementation

I first read about Omega 3 fish oil supplementation in The Late Talker book. They devote an entire chapter to the topic. As an SLP I am frustrated that there isn’t more research out there and I would hesitate to recommend something with so little research. As a parent of a child with suspected apraxia I have a completely different opinion. There’s almost no evidence of harm, and the possibility of hope. Why not try anything that might help?

Here are some of the articles I have found on the topic in addition to the Late Talker book. Read them and decide for yourself.

• Dyslexia, Dyspraxia and ADHD – Can Nutrition Help? This article nicely summarizes some of the actual research out there on fish oil supplementation and disorders. Note that in this article the term dyspraxia does NOT refer to apraxia of speech.
• Essential Fatty Acids This is a generic article on fish oil supplementation.
• Long-Chain Polyunsaturated Fatty Acids and Learning Disabilities This article talks about some of the research on fish oil supplementation and learning disabilities.
• Syndrome of Allergy, Apraxia, and Malabsorption: Characterization of a Neurodevelopmental Phenotype that Responds to Omega 3 and Vitamin E Supplementation This is a research article published in the Journal of Alternative Therapies in 2009. However, this research study did not have a control group, so although as a parent I am encouraged and interested, as an SLP I am still not convinced.
• The Omega Wave This is a pretty interesting news article on fish oil supplementation and learning disability, but it is just a news article, not a research article.
• Nordic Naturals Ultimate Omega LiquidThis is the product we eventually decided to use. We are not giving the recommended dosage for an adult. I am not going to tell you what we’re giving, because I’m not comfortable giving dosage advice. Make your own decision after reading the research yourself and consulting with your pediatrician.

You might ask how on earth we get our two year old to swallow a fish oil liquid. The answer is that we don’t. We disguise it as an after dinner “special treat”. Sometimes we mix it in with a couple of tablespoons of lemon flavored yogurt. Sometimes we mix it with raspberry sherbet. Sometimes we mix it in with those yogurt drinks they make with kids. She doesn’t even know it is there. Getting her to eat it is usually no problem at all.

The product is not fishy at all. If it tastes fishy or smells fishy it has spoiled. We store our bottle in the freezer to extend its shelf life.

Is it working? Who knows? Ava’s progress has been amazing. But we started the supplementation at pretty much the exact same time we started therapy. Who knows if it is the therapy or the Omega 3s or both?

Poll #1 results

So, 9 people responded to the last poll asking why they visited my blog. 8 of those people were here because they have a child with apraxia. So now I have a new poll up. I'm wondering how old your child with CAS is (or suspected CAS). Answer if you feel comfortable doing so. :-)

A new power put to use

Ava is learning to communicate and she loves it. She feels empowered. She can ask for the specific food she wants to eat. She can request the specific television show she wants to watch. She can ask her mama or daddy to drop what they’re doing and come play. She can tell her brother “no”. So many things are now possibilities that weren’t before. Mostly this is all good. However…

She’s also about to turn two. We’re celebrating her birthday this weekend, in fact. You know what they say about two. It often involves the words “terrible” and “tantrums”. Combine the explosion in her ability to communicate with the natural nature of a two year old and you get a child who has discovered how to protest. Loudly. At great length. Complete with tears and wailing. For example, we came in from a walk. Ava wanted to go back outside and I told her that we couldn’t because it was time to get dinner ready. She sat in front of the door and cried for 15 minutes. Then she finally noticed that I wasn’t paying attention and gave up. This is happening more and more frequently. Now it tends to be at least once a day.

Ava is also developing a mama thing. When she asks for milk she wants me to get it for her. If she needs to potty she wants me to take her. When it’s time to get ready for bed she wants me to read the books. And you should see the performance when I leave her at school two mornings a week. At first we indulged her. It didn’t seem like a big deal to just have me take her to the bathroom instead of her daddy. But then it got worse. The insistence on mama instead of daddy started coming more often and the protests became more dramatic. Now, she will simply refuse to use the bathroom unless it’s me. Even if my husband carries her to the bathroom and places her on the potty, she won’t go. The child certainly knows her own mind. I’ve seen her hold it for more than two hours rather than go for her daddy.

I don’t really know what to do about any of this other than to refuse to indulge her. Surely this is a stage that won’t last forever?

Early Intervention Therapy

We’ve had two sessions with our Early Intervention therapist, Ms. A. now. I'm not sure how it works elsewhere, but here in Missouri, the early intervention therapist comes to your house. Other than the fact that I'm forced to clean, it is super convenient. She's coming once a week for an hour as we decided in our IFSP meeting.

Ms. A is great and I like her a lot. She’s already building a rapport with Ava and Ava is working well with her. She’s given me some new tips that work well with Ava. Ava is right at the border between one syllable utterances and two syllable utterances. We’re all trying to work with her to try to get her to make that jump up. Ms. A introduced tapping. It’s simple, but it really helps Ava hear that she needs to be producing more syllables. Nana (for banana) is two taps. Mo mi (more milk) is two taps. Right now, she can say more. She can say milk. She cannot say more milk. But if you tap, she’ll try. It usually comes out mo, mo. But at least she’s trying to imitate both words.

Another idea she had was to use an exercise ball during therapy. Children with apraxia often have more success with speech productions when they are paired with movement. So she put Ava on the ball and did Row, Row, Row Your Boat with her. The song was super slow and she rocked Ava back and forth with each word. By the end of the song Ava was trying to sing along. It was adorable.

Right now, the therapy sessions are more indirect and play based than I’d like. Therapy based on motor planning principles is all about getting lots and lots of productions, and you just can’t get as many productions in play based therapy. I’d love to see Ms. A begin to incorporate a more structured part of the therapy session at some point, but so far they’re really just getting to know each other. It will come. And if I want that to happen I’ll have to figure out a way to keep Michael occupied elsewhere. But overall, I’m pleased. It’s an excellent beginning.

Sensory Issues?

Have you ever noticed that once your child has a diagnosis you see everything through the lens of that special need? Ava has started to show some behaviors that make me wonder if she has some sensory issues, but there are other perfectly reasonable explanations for each behavior individually…

For example, she’s a really, really picky eater. She likes breads and pastas although she’s even picky there. If there’s a little piece of crisped cheese on the pizza crust it must be picked off. If the pasta is penne instead of rotini it is rejected and so on. She’ll eat most fruits, but the only vegetables she’ll eat are raw carrots, celery, or cucumber with dip. She’ll eat chicken nuggets, but no other meats. She won’t even touch a hot dog. She loves cheese, yogurt and milk. We serve what we serve at dinner. I just try to make sure there’s one thing on her plate she’ll eat even if it is applesauce. Last night, for example, we had pot roast. The rest of us ate the roast and veggies with gravy. She ignored everything on her plate except the applesauce. Anyway, before the speech delay I just figured she was a picky eater and that she came by it honestly (I’m picky. Her grandmother is picky.) Now I’m beginning to wonder because there are other things too.

She’s recently become very upset by wearing anything with a tag. It never seemed to bother her before. Perhaps though, we know now because she finally has a way to tell us. And any of her pajama bottoms or pants that have a tag are now instantly rejected. This morning I had to put her in a different shirt because of the tag in the first one I tried. So I begin to ask myself, “Is this sensory?” There are perfectly reasonable other explanations. She has sensitive skin and I can see with my own eyes that the tags on her pants are irritating the small of her back. The skin is scratched up in that area. So the explanation could simply be that the tags do actually bother her skin.

She also absolutely refuses to let me put anything in her hair. Her hair is finally (near her second birthday) growing out enough that it’s getting in her eyes a little. I’d like to put in a barrette or something, but she acts like it is hurting her and will continue to be bothered by it for hours. I know this because once I managed to distract her enough to leave on an outing with it in her hair and in every quiet moment her attention immediately returned to it. Now she has a complete meltdown if I even mention putting in a barrette. Again, this could just be a normal kid behavior. I don’t know. This is my first little girl.

But now I have three things: the food, the tags, and the hair stuff. If I put all of those things together does it paint a different picture than each one individually? I don’t know. Perhaps I’m just paranoid at this point. I haven’t really researched sensory issues yet. Even if she does have some sensory issues, what would the significance of that be? What would I do differently? Does anyone out there have any experience with or knowledge of sensory issues? Do you think I’m reading too much into completely unrelated, relatively typical kid behaviors? Opinions welcome.

Therapy Progress – Speed of Light

My last update on Ava’s speech therapy progress was almost exactly three weeks ago. At that time I had only been working with her for about 2 and ½ weeks and her progress was amazing. I commented that in terms of her speech she looked like an entirely different child than before I started working with her.

Three weeks later and she continues to make progress at an almost unbelievable rate. I keep waiting for the other shoe to drop. I’m so glad I’m blogging about all of this because otherwise I wouldn’t believe it myself. I have dropped down to more like an average of 4 sessions a week (in addition to the therapy she’s getting from others). Real life keeps interfering. Ideally I’d work with her every single day, but sometimes it just doesn’t happen.

So, three weeks ago she’d imitate easy things when bribed by food and spontaneously about half the time. She was using /d/, /m/, /h/, /s/, /n/, /sh/, /t/, /w/, and /b/ (not all clearly, but trying). She had a limited number of vowels but refused to even try new ones. She was using CV syllable structure and could imitate simple CVCV syllables (mama, dada). She was using 15-20 “words”.

Fast forward three weeks and she’s moved up to a whole new level again. She’s added more consonants including /p/ and /y/ (the sound at the beginning of yellow) and gotten much better at some of the ones she was just starting on three weeks ago.

She’s also making progress on her vowels. Her productions of the ones she already knew are getting cleaner and she’s adding new ones like the short /i/ and the long /e/. More importantly, she’s willing to work on them now. Before I couldn’t get her to even try a new vowel.

She’s using CVCV syllable structure spontaneously. Our family members finally have names. We’re “mama” “dada” “papa” and she has approximations for her own name, her brother’s name and her grandmother. (And that still hasn’t grown old. She loves calling us by name and does it frequently just because it makes her happy. It makes me happy too.) Even more impressive, and just in this last week she’s starting to be able to do CVCV words where the vowel changes. So she can do “nanuh” for banana. Or “babi” for baby. They’re messy, and the vowels aren’t pure, but you can tell she’s trying to make the two vowels sound different. Occasionally they will just pop out clear as day, but most of the time they’re messy.

Before she was using 15-20 words total. Now I truly couldn’t count. She’s spontaneously attempting new words. Her receptive language is great and always was. She knew the words for things, she just couldn’t say them. Everything was locked inside. Now she’ll just try. What pops out of her mouth often sounds a little like what she’s trying for, but I’m mostly guessing from context. The point though is that she’s trying on her own. She just looks at something, or wants to talk about something she sees on tv and just tries to tell us about it. It shows such a gain in confidence on her part.

Seriously, if I were working as a professional (rather than as a mother in this case) and evaluated Ava six weeks ago, then three weeks ago, and today and then I put those evaluations side by side I wouldn’t think they could possibly come from the same kid. I’m humbled and grateful and amazed at what she has accomplished. In fact those words don’t really fully express how I feel about all the progress.

Why is it working? It is the fish oil? You have to wonder at least a little. Is it a matter of lots of the right kind of therapy at the right time? Would she have gotten better anyway if we had just left her alone? Is it that her speech problem is just really responsive to intervention - so once we started working with her the problem that looked so severe turns out to be milder? Am I getting excited too early because a plateau is just around the corner? We’ve come so far. And there’s still so much left to do. And I’m scared this is some kind of fluke that will be taken back. I’m trying hard to not be too hopeful. Which sounds odd, but it’s true.

Overshadowing

I haven't talked much about Michael here. He's an amazing kid. At 3 years, 3 months I'm starting to think of him as a little kid and not as my baby or toddler any more. He's so smart and helpful. He loves to figure out how things work and always wants to help fix things. He's had the opportunity to help both his father and grandfather with plumbing and car projects and loves it. He loves to be read to and we spend at least 45 minutes a day reading. He knows all his letters, both uppercase and lowercase, and he knows a lot of the letter sounds. Just this week he's started to help me read books. We were reading a Little Bear book and he could read the words "cat", "duck", "hen", "bear", and "owl" each time they came up.

He plays with Ava now and I adore watching them play together. The sound of the two of them giggling over playing tug of war or watching them roll around wrestling just fills me with happiness and pride.

He also talks all the time. Seriously. All the time. Constantly. Even when he's alone in his room I'll hear him talking through the monitor. He's talking in full sentences and is pretty much intelligible to his family and to strangers at least 90% of the time, so my speech concerns for him have disappeared. All the talking is wonderful, except for one drawback.

He spent this past weekend with my parents. Friday night through Sunday evening we were without him and it gave us a lot of one-on-one time with Ava. It was amazing. She was a lot more active and assertive and talkative when he was gone. She was the one getting to direct the play. She was the one being listened to. She was the one getting all the attention. It made me realize exactly how much attention goes to Michael when he's around. It's so natural and easy to interact with the child that is talking to you and so easy to overlook the one who is silent.

I guess I need to find a way to let Ava take center stage more often even when her brother is home. She's a delight. She's funny and sweet and interested in everything going on around her. When she gets our attention she just blossoms. Now how to make it happen without making her brother feel left out?

Book Review – The Big Book of Exclamations

Quick Disclaimer – I bought this book myself from Amazon and am not being compensated in any way for this review.

This is a review of The Big Book of Exclamations by Teri K. Peterson with illustrations by Chris McAllister. I found this book because it is one of the first books to come up when you do a search for “apraxia” at Amazon.com. This book is not a parent resource in the way that The Late Talker was.

This book is meant to be “read” with your child. I put the word “read” in quotes, because the book is not a storybook. It is designed to teach you how to use a picture book to prompt speech, and lots of it, from your child. This teaches you to interact with a child and a book the same way I was taught to do it as a speech-pathologist during a therapy session. You can then apply the same concepts to any other picture books you are reading with your child. The idea is to spend five or ten minutes (or even longer) on each two-page spread. You don’t need to read the entire book in one sitting. It’s about the two of you enjoying the book, pictures, and conversation. It’s about your child having fun talking about the book. Literally – talking about the book. How often does your child get to do that? You can easily adjust the difficulty level up or down just by modifying what you say from two words at a time to one word at a time. Or from a word like “baby” changed to “be be”. You want to model the exclamations yourself and then pause to let your child participate too. Encourage it. Play with it. Laugh at the silly things the characters are doing and the silly things your child gets to say. Have fun telling the dog, “no no” over and over again.

Why then, did I buy the book if I already know how to interact with a child and a book in this way? Well, because this book is dense. Each two-page spread is crammed full of tons on things to talk to your child about. The pictures and concepts covered are perfect for an emergent talker. I wanted the pictures. They’re great.

Let’s talk about them in more detail. First, you can see a sample page here at the book’s website. Ok. The book begins with two two-page spreads on how to use the book. However, the true beauty of the book emerges in the following six two-page spreads.

• Wake Up! Good Morning! This scene has a mommy and daddy entering a nursery with a toddler aged boy and toddler aged girl to wake them up in the morning. There’s a pet dog and cat in the scene along with lots of nursery toys including cars, blocks, planes, and farm animals. The pictures have captions in key areas prompting you (the parent) to use key words like, “Hi, baby”, “beep, beep”, “uh-oh,” and “no no”.
• Eat! Eat! This scene is of the family getting ready for breakfast. You have the mama, daddy, children and pets again and now you add a grandma. Again, there is lots going on here. You have all the items typically present in a kitchen, some playground equipment out a window, fruit on the counter, and much more. Captions include, “hot, hot”, “all done”, please”, and “dirty”.
• Ready to Go! This scene shows the family in the foyer getting ready to go out. All of the previously introduced family members are present and now we add grandpa. In addition to the typical things you’d see in such a scene like a door, stroller, stairway, side table, phone, pictures in frames you have lots of action. Captions include, “bye, bye”, “wait, wait”, Dada help”, and “run, run”.
• The Park! This scene shows the entire family at the playground. You have a slide, swing, bubbles, people playing ball and Frisbee, and even a birthday party going on in the background. Captions include, “swing, swing”, “up up up”, “pop pop pop”, and “weeeeee”.
• Bath Time! Wash! Wash! This scene shows the mama and daddy giving the children a bubble bath. It’s a great bathroom scene. Captions include, “oh, oh, duckie”, “owie, “no bite”, “pop”, and “sh- sh- shhh”.
• Bedtime – Goodnight This scene shows the entire extended family again in the nursery getting the children ready for bed. You’ve got a bedtime story, dim lights and the moon shining in through the window. Captions include, “shhhh- papa stay”, “stop”, “look, my book”, and “ni ni dada”.
  
• The final page is a picture of the family waving good-bye to the readers and the page opposite is full of captions about being all done and wanting to read again.

At the end of the book the author includes two additional two-page informational spreads. The first is about typical language development and the second is about what to do if you have concerns.

When I tried it with Ava she loved it. She was engaged by the picture on the cover of the book and we spent several minutes just talking about the cover. The book worked exactly as described. We spent a half hour or so on the first three two-page spreads. She did get antsy after the first couple of pages. It’s not like a storybook that hold their attention because they like the story itself. It’s more of an interactive activity. I would plan on using the book for no more than 15-20 minutes at a time. It would certainly be worth it even if you were only using it 5-10 minutes at a time. Pick it up, talk about a couple of pages and then put it away and save the next set of pages for the next day.

I hesitated to buy this book because I thought $20 was a bit steep given that I already know how to read this way with my children. The content is definitely worth the price of admission though. I’ll use this book happily with Ava as often as she’s interested. I would also use it in therapy sessions with any child in the 12 month – 2 ½ year age range and perhaps even with children older than that where appropriate.

I have one small criticism though. This is a book meant to be read with a very young child cuddled in your lap engaging with the book. Yet it is a hardback book with paper pages and is rather large and unwieldy. Also, some of the illustrations disappear into the binding. I found it a little difficult and uncomfortable to hold when reading it with Ava. I wish the book were available in a ¾-size board book form. I would actually pay $5 or $10 additional dollars to get the book in that format and consider it an investment.

This book was not available through my local library system. I’ll admit that I did not check out local bookstores. Amazon does however, carry the book and so you can find it there for sure if you are interested.

Bottom line: Highly recommended.

First therapy session – Ms. J

We had our first session with Ms. J this weekend. To remind you, this is the speech-pathologist who is our local expert in apraxia who I almost missed the opportunity to work with. The session went very well. It is amazing how cooperative (comparatively) Ava can be in order to get to play with new toys. Well, except these:

I believe these are a relatively popular toy. Ava did not like them at all. Let me interpret her urgent gestures and grunting for you…. “Please put those away….no really. Now. Please. Now. I mean it. Get those away from me. Far away. Out of sight. Right this minute!” So, after the failure to use sing-a-ma-jigs as a fun new toy we moved on to better new toys to play with.

It was an introductory meeting. Everyone was getting to know each other. It wasn’t an instant miracle therapy session where I heard things I had never heard before. I wasn’t expecting that. What did impress me was how quickly Ms. J was able to figure out exactly:

• what Ava is currently capable of
• what Ava is not capable of
• what we should start to work on first.

Then she was able to give me some great ideas on how to start working on those things.

I came home with a lot of information and was able to sit down and reflect on what I learned. I sat down and listed about nine things off the top of my head to focus on over the next two weeks that I wouldn’t have been working on if I hadn’t met with her. I’m very happy. I think she was the missing piece in our equation. I have the skills to work with Ava myself, but not the expertise and experience to know what is most important to work on first. With the guidance of an expert, I expect to be 10 times more effective and that is very exciting.

On a completely different note, one thing she didn’t do is confirm a diagnosis. I want one, of course. Which sounds bad, when I think about it. Why on earth would I actually -want- my baby to have a diagnosis? It just makes things concrete. It gives me something specific to fight. Anyway, she didn’t give a firm diagnosis for the same reasons no one else will. It’s too early to tell for sure. She noted some specific characteristics of Ava’s speech that are consistent with apraxia (speech and language history, limited vowel repertoire, etc), and some that are not consistent (Ava actually has decent prosody). We’re going to approach therapy from a motor planning perspective, so what we call the problem is not important.

To confirm the “it’s a small world” phenomenon, Ms. J actually knows the First Steps therapist we’ve been assigned to and thinks well of her. Our First Steps therapist, Ms. A, is actually a former student of Ms. J and they work together as colleagues now. Nice to know Ava will soon be surrounded with excellent therapists.

Macaroni Fun

So a few weeks ago our Parents as Teachers educator came by for our home visit. She brought an activity where she had a small bin filled with macaroni and measuring cups and the kids could dig and pour. She also brought small wooden animals to bury in the macaroni for them to find. They loved it!

I decided to make one for us on a grander scale. I bought a big bin and 30 pounds of pasta in bulk. The kids played with it for over an hour along with a visiting guest. It’s like an indoor sand table, but with less mess. Even when the macaroni gets scattered it is easy to scoop back up and put back in. If you do the activity on a large blanket it is even easier.

It would be easy to incorporate some speech practice too if you’re doing it one-on-one. You can target in, out, up, down, more, big, little, etc. You could also use (bury them and then dig them back out) small dolls or lego figures for mama, dada, baby, and other family members. You could use small animal figures for animal sounds like moo, baa, neigh, etc. If you’re working on colors you can incorporate different color cups and practice your color words. If you’re working on two word phrases it’s even better because you can do mama in, daddy out, uh oh baby, moo up, baa down, etc. Fun and speech all at the same time.

Another Mom Tells a Funny Story / "The Look"

So here's a funny story from a mom who's daughter has CAS. This particular post is about her son though. To be honest, I haven't read enough of her blog yet to know if her son also has apraxia, but he must have some speech issues because he's working on some sounds and that led to a funny (although not at the time for her), very public exchange in a store. Check it out.

She also refers to "the look" - that look your child gives you when they know you aren't getting what they are trying to say. I'm just now being introduced to that look, but I know it already. It makes me sad. It is terrible enough that I know other people will struggle to understand her. I want to be able to understand her all the time. I feel like it's my job as her mama and the least I can do. But I can't.

Instead I will try hard to let her know that it's all right when people don't understand. She always has options. She can always try another way. I guess my real job is to equip her with the tools she will need to communicate successfully in any way that she can and the persistence to always keep trying. That's my goal at least.

Updates - ENT and Lost Opportunity

Well, I don't know if any of you encountered the huge winter storm that went through a third of the country this week, but we were pretty much center stage. We had 12 hours or so of freezing rain / sleet on the very day of our ENT appointment. Needless to say, we've rescheduled. Now we're going to try next Tuesday instead.

It seems like such a pointless endeavor. Ava is going to hate it. We might not find out anything useful at all. And I feel like she can hear - why am I even putting us through this? Surely her receptive language wouldn't be pretty much normal if she had a hearing loss. Surely she wouldn't ask about the car driving by outside, or the big bang (caused by her brother) from the other room if she can't hear.

On the other hand, she hangs out right in front of the television when it is on. Occasionally she doesn't respond to her name or a request (What child doesn't?). And we need to be sure there isn't some subtle kind of hearing loss that could be affecting her understanding of speech and the various speech sounds. I would feel pretty silly if I spent all this time worrying about apraxia to later discover it's something entirely different. We just have to be sure. It looks like apraxia. In fact, it looks more and more like apraxia every day. But I have to eliminate other possibilities. And so we'll try the ENT. Wish me luck. (Difficult child. Grumble, grumble.)

I also posted the other night about my mis-communication with the local apraxia expert. We'll call her Ms. J. Well, I got lucky there. At first, she did tell me that she had filled her appointment slots. I wrote back to her with a very nice email asking her to let me know if any were open for her next clinic weekend and apologizing again for the mix-up. She wrote back and offered me a early morning appointment at 8am. She was willing to come in early just to see us. Since Ava and Michael have taken to waking up at about 6:20 in the morning these days, getting to an 8am appointment is easy. I was grateful she offered and I'm so excited. I'll let you know how things go and what Ms. J thinks of Ava's speech after we meet with her.

Book Review – The Late Talker: What to Do If Your Child Isn’t Talking Yet

This is a review of The Late Talker: What to Do If Your Child Isn’t Talking Yet by Marilyn Agin, Lisa Geng, and Malcolm Nicholl. Marilyn Agin is a developmental pediatrician that specializes in apraxia and Lisa Geng is a mother of two late talkers. This book’s target audience is parents, not professionals. They want to educate parents of toddlers who are late talkers. Their first chapter is a brief overview of normal speech development and the second talks about the consequences of speech delays. The third chapter briefly introduces you to speech disorders in general and Childhood Apraxia of Speech in particular. These first three chapters are a well written overview of the background information you need to know in order to understand what exactly the problem is with your child’s speech and why it matters.

Next the book begins to go into what you can do about it. Chapter four is about the various professionals you will meet when you begin to try to get help: developmental pediatricians, speech-language pathologists, pediatric neurologists, etc. Chapter 5 is about getting the right kinds of therapy. Chapter 6 is about insurance. Chapter 7 is about things you can do at home (several good ideas here). Chapter 8 is about fish oil supplementation. Chapter 9 is about your child’s frustration and how you can cope with it. Chapter 10 is about your frustration and fears as a parent and how to cope. Chapter 11 is a summary.

Pretty much every chapter covers a topic that is interesting as a parent who is dealing with a child who is a late talker. I highly recommend the book. I think it is a great place to start if you’re just beginning to research. I think it can be a useful review that might hit some areas you’re unfamiliar with even if you’ve been looking into CAS for a while.

If you have a Kindle, or a smartphone that runs Kindle, you can download a sample of this book for free. If I remember correctly, the sample includes the introduction and maybe even the first chapter. I was able to get the book through my local library. Even if I had purchased it, I would have felt it was money well spent. I also saw the book at my local Barnes and Noble. So it is pretty easy to get your hands on a copy of this book if you are interested.

If you've read it, or go out and read it, let me know what you think.

Opportunity Lost?

So, nine days ago I was offered an appointment with a local expert on apraxia. This person only sees clients twice a month on the weekend and the appointment was for this coming Sunday. I was so excited to have the opportunity to work with her and to have her meet Ava. I emailed her back immediately and said, "Yes, please!"

And then I waited and waited to hear back from her confirming the appointment. Tonight I went back to re-read that email I sent to her so that I could write her another email gently reminding her that I still needed to confirm that appointment.

And I realized that I accidentally sent my response to her email to my husband instead. I never wrote her back! I immediately re-sent the email to her and added an apology and explanation for the delay and I'm now waiting to hear back from her.

But I'm sure the appointment is long gone by now. I'm so disappointed. An opportunity lost. Hopefully she'll have an appointment available two and a half weeks from now. Hopefully.

Therapy Resources – The /b/ list

Description:
My goal here was to collect a list of simple words and images that start with /b/. I needed them to be familiar to a young child. I wanted to have at least one word/image for each vowel sound. Some of vowels have several /b/ words because I was able to think of more of them. If your child can produce the whole word, great! Go for it. However it is perfectly fine if all they can produce is the /b/ followed by the vowel. For example if all they say for bottle is /ba/, that’s great. If they can say /ba ba/ that’s one step more complex. If they can say /ba ba/ three times in a row that’s even more practice. You will probably find that your child can make some of the /b/-vowel combinations more easily than others. That’s typical too. Don’t push too hard. It’s your SLP’s job to work on new things. You can just use these to practice things that your child already can do. The nice thing about this word set is that you know it combines /b/ at least once with each vowel.

Activities:
This, of course, depends on the age and attention span of your child. At the simplest level you can simply hold up each card and ask your child to imitate the word (or simplified version of the word). I’ll admit, bribery here can be useful (stickers, stamps, cheerios). You could also print out two sets and play a matching game with a few pairs at a time.

For an older child you could make a game board with the images and use simple game pieces and a die or spinner. If you had two sets you could play a card game similar to old maid or uno where each player is dealt some cards and tries to get matches by asking the other player for cards. If you have any other ideas, please contribute them in the comments or send me an email and I’ll include them here as well.

Tip: Print them and then “laminate” them by putting them between two sheets of clear contact paper. They’ll last much longer that way.


I’ll admit it. I’m new to this blogging thing and I can’t figure out how to give you guys a link so that you can just download a nice quality version of these. The best I could do is the pictures. If you’d like me to send you a pdf, just send me an email and ask for the /b/ pictures. I’ll send them right along.
I found all the images via google image and tried to avoid the ones with watermarks. If any of you have suggestions for additional words to add to this list please let me know and I’ll put them in. I hope some of you find these to be helpful.

Words:

1. bug
2. bus
3. bun
4. ball
5. bottle
6. box
7. baby
8. bed
9. bell
10. bin
11. bit
12. bib
13. baa
14. bag
15. bath
16. bat
17. bam
18. bead
19. bee
20. beam
21. bean
22. beep
23. boo boo
24. boot
25. badge
26. book
27. bull
28. bush
29. boy
30. brown (say /bow/ like bow before a queen)
31. bow (say /bow/ like a bow in your hair)
32. bowl
33. bone
34. boat
35. bye, bye
36. bike
37. bite
38. bake

Does therapy for Childhood Apraxia of Speech need to be different than other types of speech therapy? - Parent Question

Let’s pretend we’re in a room together. We’re watching our young children play and talking apraxia because we’ve both been told that our children have a likely diagnosis of Childhood Apraxia of Speech. As a parent who also happens to be an SLP I have a unique perspective to share, so you ask me if it is true that therapy needs to be significantly different to treat apraxia. This is the way our conversation might go. It's just my two cents.

First let me give you some background on speech disorders. In my mind I separate them into three main types.

1. Articulation Disorder - This is when a child has difficulty pronouncing a specific sound correctly. Often the sound is /r/, /l/, or /s/. They may have trouble with two or three sounds, but the problem is with the sounds on an individual level. Usually this kind of problem doesn’t impact their intelligibility (how easily a stranger can understand them) too much and is relatively easy to address. The therapist would work on helping the child learn to make the sound correctly first in isolation, and then at the beginning, middle, and ends of words. They’d move up to phrases and sentences. This type of problem is relatively easy to address and if the child has a sound that simply won’t respond to remediation, the consequences aren’t that severe.
2. Phonological Disorder - Make a /k, k, k/ sound out loud. Now make a /g, g, g/ sound. Both of those sounds are made in the back of the mouth with the back of your tongue. Now make a /m, m, m/ sound and a /p, p, p/ sound. Both of those sounds are made in the front of your mouth with your lips. All of the consonant sounds in our language can be categorized by the place in the mouth in which they are produced and by how they are produced. Some sounds are front sounds and some are back sounds. Some sounds are stop sounds and some sounds are fricatives. Children with a phonological disorder have trouble with groups of sounds. They might take all front sounds and produce them as back sounds instead. Alternately they might take all back sounds and move them to the front. They might take sounds that are supposed to be long and drawn out like /s, sh, m/ and shorten them. You get the idea. The more patterns they have difficulty with the harder they are to understand. This type of disorder can significantly impact a child’s intelligibility and is more difficult to remediate than a simple articulation problem. When treating a child with a phonological disorder you treat the patterns rather than specific sounds. The way the SLP structures therapy will be different than with a simple articulation problem and that difference is important if you are going to see the most change in the shortest amount of time. A phonological disorder is a significant speech disorder that takes a lot of therapy to address. You can address it in a group setting particularly if you group children together who are making errors with the same phonological processes.
3. Childhood Apraxia of Speech - This is a completely different kind of problem. It is not a problem with a specific sound or even with groups of sounds. This is a neurological motor planning disorder. The child knows what they want to say. The mouth is physically capable of making the sounds. The planning of the muscle movements necessary to make the sounds is what is difficult. This brings the scope of the problem to a whole different level. Now you aren’t just trying to fix the sound /s/. You’re not even trying to teach a child who is moving all their front sounds backwards to bring them back to the right place. You have to help a child learn, at the level of muscle memory, how to produce all the possible sound combinations. This is a huge task because the way the muscles have to move to produce /baa/ is different than the way they have to move to produce /bee/ . So you can’t just work on a generic /b/. Therapy needs to be designed with a motor planning approach. Targets have to be carefully chosen. Therapy needs to be focused on getting the maximum number of productions possible. Therapy usually needs to be one-on-one in order to achieve this. Ideally, you’d have therapy multiple times a week and your therapist would be teaching you how to do carry-over activities at home. You want to be (gently, of course) focused on getting your child to incorporate his target productions into his daily routine as much as possible. You want him to be using his target productions with a wide variety of people in a wide variety of situations. You want them to learn and overlearn everything so that it becomes automatic. Typically, children with CAS need a lot of therapy to show improvement. Typically, especially early on, it has a pretty big impact on intelligibility and these children are extremely frustrated. Typically a child with CAS will not progress when the therapy type is not focused on motor planning. That is why it is important to know if your young child looks like a likely candidate for CAS. You need to get the right kind of therapy and a lot of it as early as possible. Go back to this post and read the three bolded sections near the bottom for some quotes directly from ASHA or research articles that pertain to the issue of appropriate therapy for CAS.

As you can see, at least on paper, there are some pretty clear differences between the main types of speech disorders and clear differences on how to treat them. In reality, it is always more messy. It can be difficult to tell the difference between a very young child with a severe phonological disorder and a very young child with CAS. I talk about the red flags for CAS in a young child here. If your therapist is not sure, he or she may begin with more general expressive language stimulation / phonological therapy. If your child does not make progress over several months using that approach, that’s additional evidence that you may be dealing with CAS.

There is no significant disadvantage in trying an intensive motor planning approach to therapy to see if your child responds. And if your child does have CAS, research shows that it is with this approach that the most progress is made.

(Note: there are several different packaged approaches / programs of intervention designed to address apraxia that you may have heard of such as Kaufman, PROMPT, Dynamic Temporal and Tactile Cueing, etc. All of these approaches are fundamentally based on motor planning theory.)

A series of challenges – not just one

Well, we’ve broken through one barrier only to find another waiting for us. Literally, less than a month ago we had a totally different looking toddler. That toddler rarely spoke at all choosing instead to gesture or say the word “da” for everything she absolutely needed to communicate about. I so wanted to hear her voice. I wanted her to imitate and try. I wanted to hear “mama”. I wanted that light bulb to switch on. I wanted her to know the power of the spoken word and what it can do for her. I never stopped to think about what might come next. Because I had never thought about it, I think I thought everything would magically be better once these things started to happen.

Well, all of those things have happened. It’s amazing! It really is a miracle and I am grateful. It’s the first step in a journey. Without this step, nothing else could happen. However, now it is clear that it was only the first step in what will be a long journey.

She gets it. She really does. And so far it makes her happy and proud. She gets that everything has a name that she can try to say. She knows mommy and daddy are excited that she’s talking. She gets that when she successfully communicates she gets what she wants and that talking is a powerful tool. When she’s thirsty she can ask for a drink. When she’s hungry she can ask for food. When she needs help she can get it. Her sounds and number of words have increased an incredible amount in just a few weeks. She’s trying to label.

So now I’m just starting to see how inaccurate her productions are. So many things come out incorrectly. There are so many things she cannot imitate at all. And she wants to say two words at a time. It will be two words that she can say separately. And yet when she tries to put them together she fails utterly.

And she’s starting to realize it too. She’s starting to get frustrated by our lack of ability to understand what she’s trying so hard to say. I want her to be proud. I want her to be successful. I want to protect her from the frustration and failure. But I can’t.

What makes a Childhood Apraxia of Speech diagnosis "official"? - Reader Question

I’ve had several people ask me how I got an official diagnosis for Ava this young. The answer is that technically I haven’t – you can’t. I have had two speech pathologists other than myself evaluate Ava and tell me that her likely diagnosis is apraxia. In the next month or so I’m expecting her to meet with two more SLPs both of whom have a great deal of experience working with children with apraxia. We’ll see if they agree as well.

How is a child “officially” diagnosed with apraxia?
To be honest, there isn’t a lot of good research out there about apraxia. The research just hasn’t been done. The research that has been done was pretty much all with older children, and tends to show some disagreement about what the criteria should be. So when diagnosing CAS, SLPs will look for the diagnostic criteria that are most commonly agreed upon.

An experienced SLP will spend time with your child administering a variety of tests/tasks designed to look for the following characteristics:

• Child makes more errors when attempting to produce longer words or phrases (multi-syllable words or multi-word sentences).
• Child has abnormal prosody (unusual stress patterns, intonation, volume control, and rate issues).
• Errors are inconsistent. If the child says the same multi-syllable word three times it will come out differently each time.
• Child has a reduced number of vowels and demonstrates vowel errors.
• Child has significant difficulty imitating words and phrases.
• Child uses predominantly simple syllable shapes (they substitute shorter, simpler words for longer, more complicated ones).

So if you have a little one, say a child between the ages of 18 months and 2 ½ years you’ll look at that list and think to yourself that there’s no way you can test most of those things with your child. There isn’t enough speech. You can’t test multi-syllable words. They don’t even have single syllable words. You can’t test imitation of words and phrases. They don’t have any. You can’t test if errors increase with increased length, because they don’t have long utterances. So that’s why you can’t get an “official” diagnosis of apraxia for a very young child.

What is my SLP looking for in order to give an “unofficial” diagnosis of CAS?
There isn’t enough research yet on young children who later go on to be diagnosed with CAS. Little ones with CAS look different than older children with CAS. There has been enough research, barely, to come up with official diagnostic criteria for older children with CAS. But, as we just discussed, the things that they look for in older children cannot be tested in younger children. There are, however, certain red flags for younger children. If these things, or most of these things, are present in a young child who is a late talker, it is much more likely that the child will go on to be diagnosed with CAS later.

• Reduced or absent babbling as a baby.
• Extremely limited number of consonants (often only /b, m, p, t, d, h/ or fewer).
• Use of grunting and pointing as a main mode of communication beyond 18 months of age.
• Use of a single syllable or word universally. (For us it was “da”. Ava used it for pretty much everything.)
• Most vocal communication is in vowels only.
• May see groping or struggle behaviors when attempting more complex sounds or combinations of sounds.
• Use of a limited number of vowels.
• Vowel distortions present (the vowel sounds are not “pure”).
• A word will be used for a short while and then will completely disappear never to be heard again.

Why should you care about a diagnosis at all? Official or unofficial?
I can think of two reasons you might care. The first is insurance. Sometimes people can get insurance to cover the cost of speech therapy if you can get an “official” diagnosis of CAS. The second reason is to be sure you are getting the appropriate amount and type of speech therapy. This second point is important enough that I’m going to devote a separate post to it. Children with CAS need intensive therapy and that therapy needs to be of a certain type. Usually a child with CAS does not improve when treated with the types of therapy typically used for other speech problems. If you have an official or unofficial diagnosis of CAS you’re going to want to be sure you’re getting the right type of therapy and plenty of it.

Competing Priorities

I'm a stay-at-home mom right now and for the foreseeable future. I try to spend a lot of time playing with my kids. In an ideal world I'd do some sort of special, planned activity every day (art, cooking, building, etc). I don't actually do that every day of course, but I try - or I used to.

Ever since Ava's diagnosis I've been doing all of the things a parent needs to do in such a situation: phone calls, research, and taking Ava to appointments or having appointments here. It all consumes an extraordinary amount of time. Then, on top of all of that, I'm trying to research as an SLP to guide my work with Ava. I'm studying the disorder of CAS, learning about the various approaches to intervention, purchasing and reading books on the subject, and beginning to make therapy materials.

Instead of playing with my children or planning activities to do with them, I find myself at the computer most of the morning. I stop to kiss boo boos, get drinks, mediate conflicts, help various children potty, and make meals. And I try to tell myself that I'm encouraging independent play. After all, they've been playing with each other more. Yesterday they built a fort out of chairs and blankets and played in it pretty much on their own. They travel upstairs and play in their rooms or downstairs to the playroom in the basement. All of that is good. But I still feel guilty that I'm not doing more with them right now.

Life will balance out again eventually, right?