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?

The secret and the consequences

I have discovered the secret to getting my children to enthusiastically finish off an entire bowl of carrots (or cucumbers or celery) and then come begging for more. First, provide dip. Second, give it to them before the meal. Serve it when they’re hungry, but you haven’t finished getting dinner ready yet. I put out a bowl of raw veggies with a side of dip and they go to town. If I serve it with the meal they’ll eat one or two. If I serve it before the meal they’ll polish off a whole bowl and ask for more.

I did this the other day, but told them “no” when they asked for seconds. I wanted them to be hungry for the rest of the meal. A few minutes later they wandered into the kitchen hands and faces covered in ranch dip. Since they were out of carrots they had just decided to finish off the dip with their hands. Sigh. I said to Michael as I was wiping off his hands, “In the future, we do not eat dip with our hands.” He asked, “Is this the future?”

A magical 90 seconds

Imagine, if you will, a play place at the mall. In it there is a small rowboat divided into two sections by a small bench to sit on. On one side of the bench, nestled in the spot where the feet would go if you were sitting on the bench, is a young girl perhaps 2 ½ or 3 years old. Ava crawled into the other side facing the bench and the girl.

Now, what would usually happen here is that the other child would make some sort of friendly advance towards Ava. She would respond by screaming and turning away as if she’d been attacked in some way and I would have to apologize to the parent and explain that Ava reacts that way to everyone. I promise. Their child had been perfectly polite – friendly even. Then Ava would run/crawl/climb away as quickly as possible while I try to explain to her that the other child was just trying to be nice.

This time was different – wonderfully different. The other little girl glanced at Ava, only briefly, and smiled and then began drumming on the bench. Ava smiled back and began drumming too. They were playing together. Both laughing. Making eye contact. When one would stop, the other would start again and more laughter and drumming ensued. At one point the other little girl stood up saying, “Up!” and Ava immediately mimicked her standing up and saying “Uh!” And then they both sat down and drummed some more.

Then two other little girls tried to climb in too and broke the magic spell. At that point things were way too crowded for Ava and she left. The whole thing couldn’t have lasted more than 90 seconds, but they were a magical 90 seconds.

Imagine, other parents take such things for granted.

Playdates

Our neighborhood is filled with little boys. One little boy, who lives up the street, is only six weeks older than Michael. Let’s call him Justin. I ran into Justin’s family during one of the walks I took with Michael his first summer when he was only six months old or so and I was desperately trying to stop the crying. By the time the boys were about a year old we were doing regular weekly playdates. It’s great. They’re a wonderful family and I’ve enjoyed watching the boys go from babies that played near each other to little boys who are beginning to play with each other.

At two (almost), as you all know, I felt Ava was also ready for regular playdates. And just last week through pure luck I stumbled upon a little girl right here in our neighborhood only a few months older than Ava. Let’s call her Sara. Sara even goes to Ava’s daycare and when Ava turns two in another week she’ll be moving into Sara’s class. So the girls will be together two mornings a week until Sara moves up to the next class. Sara’s mother is really nice and we set up our first playdate this past weekend. The girls seemed to have fun. They’re a little too young to really play together, but they played nicely in the same space with the same toys. We have another playdate set up for next weekend. I hope we can continue to get together with this family. They seem nice and it is such a gift for a child to have a friend that lives nearby. Hopefully I’m planting that seed.

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.

Sweet Rituals

Daily life with small children is made up of small rituals. How do you wake them up (or how do they wake you up)? What do you do when you put them to sleep? What special games or songs are special to you? How do they greet Daddy when he comes home from work? Some rituals are pretty boring and they are just the routines that get you though the day. Some are sweet.

Ava and I have a new ritual. It's developed since she moved to her toddler bed. One afternoon when she woke up from her nap she was cranky and I just pulled her into my lap on the floor and sang to her and rocked her until she felt better. The next day when I got upstairs after hearing her wake up she was waiting for me sitting on the floor in front of the door to her room. I could tell she was waiting for me to sit down and scoop her into my lap for a repeat of songs and rocking time.

Over the next several days more steps were added. Now it is pretty consistent. She waits for me in front of the door. We sing and rock on the floor. Then she slips out of my arms and brings over a book which we lie in front of on our tummies with arms propped on elbows to read together. Then we tickle and giggle and roll around and play until I finally suggest going downstairs.

It's a sweet way to spend some time together before our afternoon therapy session and I treasure it. It's a ritual shared just between mother and daughter that we don't have to share with anyone.

Nighttime Wakenings

Nighttime Wakening One:
We were shocked awake by Ava's cries of "Mama! Mama!" We never have to go in to her in the middle of the night, but I could hear the panic in her voice. She had a foot stuck in between the rails. As soon as I got it out she instantly rolled over and fell back asleep. The scary part is that she stayed asleep when the smoke alarm went off seconds later because I had left her humidifier on full blast and coming into her room stirred the humidity up towards the smoke alarm. Logically, our high-tech smoke alarm interprets that as a fire. After turning her fan on full blast and waving a towel at the smoke alarm for what felt like five minutes it finally shut off and we were able to go back to sleep.

Nighttime Wakening Two:
Michael fell asleep quickly the other night because he had skipped his nap. I could hear a lot more restlessness and coughing than usual through the monitor and was a little worried, but not too much. I'm lucky. The vast majority of the time The children sleep beautifully every night from bedtime through to morning. But a few minutes later I knew exactly what I was hearing - the sound of a child throwing up and panicking about it. The mess was epic and involved changing bedding, wiping down the crib, carpet cleaning, washing several stuffed animals, a 10:30 pm bath, and a new set of pajamas. Michael and I were snuggled in a blanket waiting for his Daddy to finish cleaning when round two hit. An 11:00 pm bath ensued, followed by another round of laundry.

I decided we needed at least one puke free hour before trying to put him to bed so we relocated downstairs to pass the hour in front of the tv. Round three hit 40 minutes later, but this time the mess was contained to a single blanket. 40 minutes after that we managed a bucket. At that point I sent my husband back to bed and was hoping to get Michael back into his bed at 1:40 in the morning. So of course round five hit at 1:30 am. My next goal was 2:30. We only made it until 2:00am pushing my goal back to 3am. He finally fell asleep on the floor of the living room around 3am. I left him there not wanting to risk disturbing the fragile peace and slept on the sofa myself.

Toddler Personal Ad - Response

Well, I left to pick the children up from school fully intending to ask Ava's teacher about possible playmates. Then I chickened out. It's so easy to just think, "I'll do it next time."  That's just my way of rationalizing procrastinating some more.  I was feeling guilty about it because every time I put it off I let another week slip by without a good play option for Ava. 

That same night we went for a walk before dinner.  Our weather has been unseasonably warm for a change and we were taking advantage.  So in some weird and blessed twist of fate, as we were on our walk I spotted a mother and a young daughter also out for a walk. They live about four houses away (moved in recently) and her little girl is only three months older than Ava. She gave me her email address and I contacted her that night. We'll have our first playdate Sunday. 

I hope we all get along because it can't get much better than a little girl only three months older who lives less than a two minute walk away. 

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.

Toddler Personal Ad

Playmate wanted – St. Louis, MO area. Approximately 2 years of age. Preferably female, but will consider males. Serious inquires only. :-)

Ok. So a toddler personal ad is ridiculous, but I really do need to find Ava a playmate. Ava’s starting to show an interest in playing with others. When a friend comes over to play with Michael she follows the two of them around. We were at the park recently and she was fascinated with a three year old little girl who was playing nearby, but unfortunately that little girl didn’t want to play with a “baby” and Ava didn’t even have the language to try to engage her. The signs are there that this would be the perfect time to find a friend (preferably female) for her to play with regularly. But I don’t know anyone with a little girl. Our neighborhood is full of rough and tumble boys. Seriously. I can think of 7 boys under the age of five on our street. But no girls.

Ava does go to daycare two mornings a week and her class is full of children her age, but I never really run in to any other parents. Is it ok to ask the teacher if Ava has one or two children that she gets along with the most and put a note in the box of the children asking the parents if they’d be interested in a playdate? It seems… weird. And a little desperate. I hate to come off as weird and desperate.

Does anyone have an opinion on that idea? Or have any other ideas? I’m completely open to suggestions.

The sun's gift.

Last night we were heading out to the mall just as the sun was setting. There was a beautiful sunset. I explained what a sunset was and asked Michael what he thought of the sunset. He said, "I like the orange clouds the sun made for me." His favorite color is orange and the sunset was primarily orange. I just thought it was cute that he figured that the sunset was special ordered just for him.

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?

Boo Boo

There’s nothing like having to explain to strangers (and her teachers, and the nurse at the ENT’s office, and your mother….) why your toddler pitifully wails, “Boo boo, boo boo” over and over again while you’re zipping up her coat.

You see, a couple of weeks ago Ava had an itchy spot that she was scratching bloody every time we put her to sleep. Usually we have her in pajamas with a separate top and bottom, but I remembered that a friend had given us some zippered footed pajamas as some hand-me-downs that would be perfect for this situation because she wouldn’t be able to get to the itchy spot. It worked perfectly. She loved the footed pajamas. They are brown with colored dots and she would point to dot after dot saying “da, da, da, da……”. She didn’t want to take them off when she woke up and wore them for about two days straight.

Then……. One day at nap time I accidentally caught a little bit of her thigh in the zipper. It hurt and she was pretty upset, but she did forgive me and went to sleep with the pajamas on. Then that night when it was time to put it on again, she was worried and expressed her concern to her daddy by saying, “boo boo, boo boo” over and over again. He reassured her that he would be really careful and he was. But then at the last second she looked down as he was pulling the last bit of zipper up and he caught her chin in the zipper. Well, it hurt and she completely lost it. She pretty much sobbed until he took her back out of it and dressed her in something else for the night.

She’s refused to put them on ever since. I left them hanging over the banister for a while and every time she passed by she’d say, “boo boo, boo boo!” I finally put them away. Well, now every time she comes near a zipper she’s afraid. Her coat is a major problem, but it’s winter. We can’t avoid the coat. She’s even afraid of being buckled into her car seat. It’s crazy how she’s overgeneralized the situation and I don’t have the slightest clue how to deal with it. I’m not using the pajamas any more, but we have to use the coat and the car seat. Anyone have suggestions?

ENT visit and next steps

Our visit to the ENT wasn’t a total disaster. Ava was pleasant to everyone as long as they weren’t sticking anything into her ears. She said, “hi”, and “bye” appropriately and adorably to everyone who went by. She also picked the ENT’s office as the time to learn the difference between calling every man “dada” and every woman “mama” and starting to call the men “man” and the women “lady.” Neither of those words is pronounced correctly, but it was still adorable to have her say “ma” (man) or “yea, yea” (lady) to categorize every person who went by.

When the doctor wanted to look in her ears she pulled a complete Dr. Jekyll / Mr. Hyde and screamed the whole time. I had to hold her head to my chest as she wailed and her whole head turned bright red. Seriously. I do not exaggerate. The child’s face looks like a cherry when she’s pitching a fit. Complete with alligator tears.

He said that her eardrums were retracted (indicating that there was probably fluid in the middle ear space) and that he’d send her down the hall to their pediatric audiologist to see what they could find out. They did tympanograms again which were still flat two weeks after the first time. (Because this involved more things entering the ear we had a repeat of the cherry head/alligator tears/restraint episode.) Then they tried to assess her hearing and even though she was fairly cooperative they weren’t able to get any more information than the last time. I really think she can’t hear the quieter noises and that’s why she won’t reliably respond to them. It’s likely that the fluid in her ears is impacting her hearing. Given that she still has fluid in her ears two weeks after the first time and that she no longer has a cold it is likely that she often has fluid in her middle ear space impacting her hearing.

So, the recommendation is to put in PE tubes. While they have her under sedation they’re going to do an ABR to assess her hearing. That way, in one day we’ll be able to fix the middle ear fluid problem and find out for sure if she can hear or not. PE (pressure equalization) tubes are tiny tubes placed in the eardrum. They allow any fluid in the middle ear space to drain out into the ear canal. They are often put in ears of children who have chronic ear infections. In our case, we’ve got a child with a documented language delay that has fluid in her middle ear space in the absence of an infection so the ENT feels PE tubes would be prudent. An ABR (automatic brainstem response) test is a hearing test that can be done while a child is asleep. It measures the brain’s responses to sound stimuli and can tell you if a child has a hearing loss when you can’t find out with a traditional hearing evaluation. So, all in one day we can address the middle ear related hearing loss and find out if she has any other hearing loss at the same time.

I hate the idea of having to put my baby under a general anesthetic. It will scare me even more as the day draws closer. But I don’t really feel like I have a choice. We need to clear up the middle ear fluid and we need to know if there’s any other hearing loss. She won’t fully benefit from her therapy until she can hear well.

Cribless

This past weekend we converted Ava's crib to a toddler bed. Our household is now officially cribless.

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.

Don't take the nap away!

The signs are there. Michael used to go down at 7:30 or so at night, fall asleep on his own in about a half an hour and then sleep through till about 7:00 the next morning. He would also go down for about a 2 and ½ hour nap every afternoon. It was a beautiful thing. Then he started playing before falling asleep at night. We still put him down between 7:30 and 8:00 in the evening, but he’s often still awake at 9:30. He entertains himself in his room, and then falls asleep on his own but it’s still a sign. He’s also waking up earlier - at around 6:15 in the morning. At naptime he plays and plays in his room. He’ll play for two hours and never fall asleep. If I go into his room and sit in a chair insisting that he lie still in his bed he’ll fall asleep after 15 minutes or so. Then he’ll still sleep for about two hours. However, I think the signs are there. He’s ready to drop the nap.

• He doesn’t fall asleep on his own for his nap any more.
• He is fine, behaviorally, until bedtime even when he doesn’t nap.
• He’s staying awake after bedtime for at least an hour or more.
• He’s waking up earlier in the morning.

He’s willing to play quietly in his room while his sister naps giving me a break in the afternoon. Why am I still going upstairs and putting him to sleep?

I do it because it’s Ava’s therapy time. That time between when Ava wakes up and when Michael wakes up is when I work with her on her speech. If I stop putting Michael to sleep he’ll hear her get up and want to come downstairs too. Then I lose the therapy time.

I need a plan for working with Ava while Michael is up, but I haven’t figured something out yet. I need to find something to entertain him quietly that won’t interest her at all. The problem is, she wants to do everything he’s doing. Until I have a brilliant idea I’ll just muddle along with the current setup. But it won’t last much longer. I think Michael’s afternoon nap is on its way out. Suggestions?

Compliment?

I was tucking Michael into bed tonight and told him in a rather sappy voice, "Goodnight, Little One. I love you." In a rather sappy voice, he returned, "Goodnight, Little One....I mean Big One. I love you too."

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

Do-over

As a parent, do you ever want the opportunity to take five minutes and do them again in a completely different way? We were at the store. Ava didn’t want to ride and so she and I were walking behind Daddy who was pushing the cart. We’d been there a while and so the adults were ready to finish up and leave. We’d lost sight of Daddy because he’d turned a corner and we hadn’t. All of a sudden I was tugged to a stop. Ava had caught sight of a little white jewelry box on an end-cap. It was placed right at her height and was the type with lots of little doors and drawers. She was already trying to open a door.

I glanced down long enough to see what was holding us up. What I said to her was, “Don’t touch, baby! Come on. Hurry up. We need to find Daddy.” Then I just pulled her along. At the time, I didn’t give it any more thought than that.

However, after my own lights out, as I was lying in bed thinking back over the day I found myself dwelling on that moment. I wish I had knelt down and helped her open every door and drawer on that jewelry box. It only would have taken a few minutes. She’d have loved it. We could have used the words, “Wow!” and “open” at least 10 times each.

As I thought back over it, I did the mommy guilt thing for at least 15 minutes and then decided to file the experience away as a lesson learned. I will try harder to remember that this is her life too and she doesn’t want to be rushed through it. I will try harder to remember that even a few minutes of our time makes a huge difference to her and her memory of any given outing. Next time, I don’t want to be lying in bed wishing for a do-over.