A series of challenges – not just one

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Competing Priorities

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

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

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

Life will balance out again eventually, right?