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.

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.

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?

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.

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.

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.

Off to the ENT we go...

So we’re off to the ENT tomorrow. This is the next step following last week’s disastrous trip to an audiologist for a hearing evaluation. I know my daughter. Let’s say I had a normal six-sided die. This is what our odds look like.

• Side 1: The visit goes beautifully. Ava is pleasant and cooperative and we find out everything we need to know. (hahahahahaha)
• Side 2: Ava is uncooperative and much pleading, bribery and trickery is necessary before we find out the bare minimum of what we need to know.
• Side 3: Ava is uncooperative and hysterical and only through physical restraint are we able to even let the ENT get a look in her ears. We find out very little of what we need to know.
• Sides 4 - 6: Ava is uncooperative and hysterical and through no means are we able to find out anything useful. It’s an utter waste of our time and the time of an expensive professional. Ava holds it against me for the rest of the day.

I know these are my odds. But what else is a mama to do? I need to know for sure that hearing loss is not part of this picture at all.

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.

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?

IFSP Meeting - Ideals vs. Practical Realities

The IFSP meeting went well overall. Everyone was nice. Everyone was well prepared. In fact, the SLP that evaluated Ava had done some preliminary research for me. She had a specific therapist in mind for Ava. This new therapist (Ms. A.) is a person the evaluator thinks would be perfect for Ava because she has a lot of experience and success working with children with apraxia. The evaluator had called Ms. A. to check if she had any openings in her schedule. She does. One. For an hour, once a week on Friday mornings at 8:30 am.

So, I had to choose. They were perfectly willing to write into our IFSP twice weekly sessions for 30 minutes. But then we couldn't work with Ms. A. Or, we can see Ms. A. for the once a week for an hour session.

In an ideal world I could have my first choice therapist see Ava for my first choice therapy schedule. That's not reality though. I decided to try Ms. A. once a week. We can reconvene another IFSP meeting and change to twice a week for 30 minutes later if this isn't working. I made that decision because I'm an SLP and Ava is willing to work with me on other days. I can learn from someone who is experienced in working with little ones with apraxia and do extra sessions in between.

If I wasn't a speech-pathologist, or if Ava refused to work with me I would have made a different choice. Once a week isn't enough to address apraxia. They need practice more often. But because we're getting therapy elsewhere, and I'm working with her too, this choice makes sense for us now.

So that's how the IFSP meeting went. I'll let you know how the first therapy session goes and what I think of Ms. A. once I meet her.

Experimentation

You hear that toddlers and preschoolers can be forces of chaos and destruction. I read a blog post recently by one of my favorite bloggers about her toddler who took a pair of scissors to their sofa and his preschool-aged brother who tried to tape up the evidence. In general my children do not do these things. I have to count my blessings as they come.

However, in the past week Ava has taken a crayon to our basement playroom wall. Crayon over about four feet of one of the beautiful walls in the playroom with the gorgeous murals painstakingly painted by their grandfather and a good family friend over about 5-10 total days of work spread out over a couple of months. This picture is of one small section. I have not yet tried to remove the crayon. I've never needed to before. Do I just take a wet washcloth to it?

Then after two hours of not napping, I went upstairs to fetch Michael and discovered that he had stuffed multiple wads of toilet paper into the bathroom sink drain (which is missing the little drain cap thing that should be there). I did manage to extract them with my good tweezers. Then his father noticed that he had apparently used a hard object to bang a series of dents into the drawer of the nice bedside table in his room.

All children seemed appropriately regretful when the error of their ways was pointed out to them and we’ve had no repeats. Still, where on earth is this coming from?

Speech Therapy Progress

I’ve been doing therapy with Ava about 5 days a week for two and a half weeks now. She’s made a lot of progress. We’ve also been giving her the fish oil supplement for about that same amount of time. Draw conclusions from that information as you will. We’re not an ideal test of which one is helping because we started both together.

Before we started I could not get Ava to imitate at all. She simply would not respond to a request to “Say _____.” Or at least, she’d only very rarely imitate. Now she’s pretty willing to imitate. Ok. I admit it. I’m bribing her with food. With food she’s willing to try most of the time. Without food, at other times of the day, she’s willing to imitate only about half the time.

Before we started Ava was only using three consonant sounds /d/, /m/, and /h/. Now I’ve been able to get her to produce /s/, /n/, /sh/, /t/, /w/, and /b/. That’s a huge difference. She learned them during our sit down therapy sessions, but she’ll use some of those sounds at other times during the day. She’ll use /n/ in “no” when you remind her. She’ll make /s/ as a snake sound just for fun when she’s in the mood. She’ll use /b/ in “book” (without the final /k/) to ask for a book when she wants one. So there’s been a huge change in her number of consonants. I consider this area to be a big win.

No significant progress in vowels. The ones she already had she will still work with. Some of her consonants she can only produce with certain vowels, not others. The vowels she doesn’t have she won’t even try. That child has a will of steel.

Before we started Ava communicated mostly with gestures, grunts, vowels, and a few Consonant/Vowel (CV) productions like /da/ for “ that”, /mo/ for “more”, and /ya/ for “yeah”. Now she’s using words and sign language when she can. She can imitate CVCVs like “mama” and “dada”. She has so many more words (all without their final consonants though). Off the top of my head, she has “more,” “milk,” “no,” “hat,” “hot,” “meow,” “moo,” “book,” “uh oh,” “ow,” “up,” “yeah,” “down,” “out,” and “help.” These are all words she’ll use spontaneously. I’m not even counting the ones she’ll imitate when I’m working with her but she’s not using at other times. I know there are more, but I can’t think of them right now. It’s pretty amazing to find myself in a position where I can’t even list all of the words she’s saying off the top of my head.

Hearing Test Disaster

Ava’s hearing test went about as poorly as such a thing could go. Crying, refusal, not wanting to enter the testing booth, not wanting anyone to go near her ears, and so on.

They did manage to do tympanograms. That’s a test where they insert a probe to a small handheld device into the ear canal. The device changes the air pressure in the ear canal in order to vibrate the eardrum and then measures the results. If the eardrum doesn’t vibrate properly, that usually means that there’s fluid behind it in the middle ear indicating a possible ear infection or negative pressure that might exist at the tail end of a cold. Those things could affect hearing, so the audiologist doing the testing wants to know if something is going on. Ava actually is at the tail end of a cold and her tympanograms did indicate reduced mobility.

Next they tried to do her hearing test. She pretty much refused to cooperate at all. They’re sure she heard white noise at the loudest level, but couldn’t confirm anything else. Sigh.

So, next week we have an appointment with an ENT to check the health of her ears and to attempt to check her hearing again. We need to confirm that she can hear at all frequencies. If there is some hearing loss, we need to know. Finding out is going to be the hard part.

What I’m Doing So Far – Speech Pathologist Edition

First let me say that I’m not an SLP who is experienced in the treatment of apraxia. Please don’t take any information I post here as a substitute for the advice of a good SLP who has a lot of experience and success working with children with apraxia of speech.

This is the follow up to the What We're Doing So Far - Parent Edition.

1. I’m doing a lot of research. I read all the articles in the professional section of the apraxia-kids website that even vaguely pertain to a child of Ava’s age. I read the American Speech Language Hearing Association (ASHA) Position Statement and Technical Paper on Childhood Apraxia of Speech (CAS). I also read several journal/research articles available on topics about CAS. I’ve saved dozens more to read when I have a chance. The first step is to become familiar with the theory.

The second, of course, is experience. I don’t have that yet. That’s why I can’t do all of her therapy myself. I’m hoping to learn from the experience of my First Steps therapist if I’m lucky enough to get someone who is experienced with apraxia. I’m also trying to set up therapy sessions twice a month with a therapist who is very experienced in apraxia. She’s willing to let me observe and to help me plan my sessions with Ava in between our sessions with her. I don’t quite have all of that set up yet, but if it works out it will be huge for Ava and huge for me professionally. I’ll get to learn from one of the best people available in our area.

2. I researched professional books and programs on the topic of childhood apraxia of speech and chose a few to purchase. I haven’t had a chance to read them all yet / work with the materials yet. When I do I’ll give you my opinions on them.

3. I researched (online) several different methods of intervention that SLPs use to work with children with apraxia. I’m still processing this information. I’ll try to write a post soon that summarizes the information I’ve gathered so far.

4. I began doing therapy sessions at home with Ava on a daily basis. She wakes up an hour earlier than her brother from her afternoon nap which gives me an ideal time in our daily schedule to fit it in.

5. I began teaching my husband and my parents simple methods of encouraging more vocalizations from Ava. We don’t want to push her or make her frustrated or self-conscious. However, given that, vocal play can be fun when made into a game. The more vocalizations per day/hour/minute the better. It’s almost a numbers game. We’ll likely never catch up with the number of times a typically developing child talks, but the closer we get the better. If anything, she needs more – many more. Her system needs to be trained through practice and repetition to do what comes naturally to them.

Bye, Bye!

Ava told me “bye, bye” for the first time last night as I was leaving her room after putting her to bed. I was ridiculously excited. And then she said it again completely unprompted as her daddy was taking her out the door for her hearing test. (SLP note: her /ai/ or long I sound is distorted and more like a cross between an /a/ as in the way a baby would say /ba/ /ba/ for bottle and a true diphthong /ai/ - but still!)

Also in the past 24 hours she pointed to me and called me “mama” clear as day and then pointed to her dad and called him “dada.” It was the first time and melted my heart.

Reluctant (Unable?) to Perform

Ava has learned some new sounds and some new words in the past week or so. We’re proud. She’s proud. She’s using them many times a day. One example is the /b/ sound which she uses in the word “book” (she doesn’t pronounce the final /k/). She always says the word while making the sign for book. When she went to my parents’ house this weekend they commented that she used the word/sign quite often there. So yesterday morning when our Parents as Teachers educator arrived and pulled out a book I prompted Ava to say/sign “book”. She grunted in protest and ran out of the room. Literally. She ran out of the room and didn’t come back for five minutes. I had to go get her. I have to watch out and try not to push her too hard, too quickly. I need to remember that increased performance demands make things harder for children with apraxia. It was nice that by the end of the meeting Ava had tried several vocalizations with her teacher and her teacher commented that she saw a lot of change in Ava since the last time she saw her (a couple of months ago).

What We’re Doing So Far – Parent Edition

1. So, the first thing I did was find a private speech pathologist. I did that first because I actually thought Ava wasn’t delayed enough to qualify for early intervention services from the state (turns out I was wrong about that, but I didn’t know that then). She’s got a great rapport with Ava and sees her twice a week for half an hour.

2. I found the apraxia-kids.org website. It has a great library of informational articles. Lots and lots of good information there.

3. I reserved several baby signing dvds from the library and Netflix. We watched them and decided on a set of signs to start using around the house. We shared that list and the dvds with my parents as well. Ava’s already started using signs like milk, please, thank you, all done, more, and help. She enjoys using them and often will vocalize an approximation of a word when she uses the sign. It’s been very good for her expressive communication.

4. We made communication boards. These are very simple. It’s just a piece of paper with 6 or 8 pictures on it. We tape the paper to the wall. Let me give you an example. In the kitchen we put a communication board with food pictures on it (milk, water, banana, yogurt, applesauce, cereal, carrots, snack). Now she can just point to what she wants instead of having to go through an elaborate routine of leading us to the pantry or refrigerator and getting us to open the right drawer, etc. She –loves- the communication board and requests a much wider variety of snacks now that she has a way to ask. We ended up making a second one with more options and hanging it up next to the first. If I can figure out how to post a picture, I’ll post a picture of our communication boards.

5. I did call First Steps (Missouri’s early intervention program). They’ve evaluated her (she qualified). On Thursday we’ll hold her IFSP (Individual Family Services Plan) meeting. After that she should begin seeing an early intervention therapist.

6. I’m working on preparing for the IFSP meeting. I wrote a separate post about that because it is important. I’ll also let you know how it works out.

7. We got the book The Late Talker: What to Do If Your Child Isn’t Talking Yet from the library. This was a good book. I would recommend reading it. I found it to be useful.

8. After reading about it on the apraxia-kids website and in the Late Talker book, we decided to try fish oil supplementation. (I’ll do a separate post about this at some point.)

9. We scheduled a full hearing evaluation at a local hospital. It's scheduled for Wednesday this week. It's important to rule out hearing loss of any kind. I actually scheduled this appointment about two months ago. It takes a long time at our local hospital to get an appointment. Two months ago when I became concerned, my first call was to my pediatrician. Her standard response was to have us get her hearing checked. I'm glad I didn't wait for the results of the hearing evaluation tomorrow to begin getting everything else set up. I'd be at least three months behind on getting therapy started. Three months is a long time at this age. Every month is critical for little ones.

Come back tomorrow for the "What I'm Doing So Far - Speech-Pathologist Edition"