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

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

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

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

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

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

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

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.

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?

Poem speaks true

I came across this poem in a blog post at apraxia-kids called In Your Silence. Check it out. If you have a little one with apraxia this speaks true.

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"

Preparing for an Individual Family Service Plan (IFSP) meeting

Thursday morning I meet with our Early Intervention service coordinator and the speech pathologist that conducted Ava’s evaluation in order to write our Individual Family Service Plan (IFSP). Every child younger than three who qualifies for Early Intervention will have one of these plans. It’s mandated by the Individuals with Disabilities Education Act.

The meeting is important. This is where her goals will be set and where her services will be determined. As a speech pathologist and a parent who has recently done a lot of research on Childhood Apraxia of Speech I know that intensive one-on-one therapy is essential. The one-on-one part will not be difficult. In Missouri, at least, your early intervention therapist comes to your home to do therapy with your child. As long as I can find a way to keep her brother occupied elsewhere, the therapy will be one-on-one. It’s the intensive part that might be difficult.

I could be wrong, but I believe that the default amount and frequency of therapy provided is a one hour session once a week. I’m going to request that that one hour per week be broken up into two 30 minute sessions. I think it is more appropriate for a child of her age. Speech therapy for apraxia is supposed to be based on motor learning principles. That means (among other things) trying for as many productions as possible. You want to get the child to produce word after word after word. That is exhausting for a little one. She can’t do that for more than about half an hour. That means that the other half hour would be wasted in terms of directly addressing her apraxia of speech. She needs at least half an hour of therapy twice a week from early intervention in an ideal world. I’d love to increase the half hour twice a week to 45 minutes twice a week. The extra 15 minutes would focus on helping Ava and the whole family learn more signs.

I’ve been on the other side of the table many times. I worked in a public school district and participated as the speech pathologist in many IEP meetings. Usually everyone is interested in what is best for the child. The meeting does not have to be adversarial in manner. It should be a positive meeting where everyone is focused in what is best for the child and family. I am going to assume that my meeting will be like that.

I am also going to be prepared. First I will actually read the Missouri First Steps Parental Rights document. Second I will find and print as many sources as possible to document the need for intensive, frequent treatment. I will make multiple copies of my research and highlight the key phrases. In this way I can show the team members research based reasons for my request.

Although I didn't use either of these documents in their entirety, I copied parts of both of these:

Cherab website - One on One Therapy: A Review of Apraxia Remediation

ASHA’s Technical Report on Childhood Apraxia of Speech

The key quote from the Cherub website's article (I've also seen the same quote on the apraxia-kids website)is as follows:

"Campbell also compared outcomes in relation to the amount of treatment provided for phonologically-disordered children with children with apraxia. The parents of 49 children with moderate to severe phonologic deficits receiving individual speech therapy were administered the same survey. For these children, an average of 29 individual treatment sessions (45 minutes in length) were required for parents to report that about three-fourths of their child’s speech could be understood by an unfamiliar listener. To achieve the same intelligibility level among the parents of children with apraxia, an average of 151 individual treatment sessions were required. "In other words, the children with apraxia of speech required 81% more individual treatment sessions that the children with severe phonological disorders in order to achieve a similar functional outcome" (Campbell, 1999)."

The key quotes from the American Speech Language Hearing Association (ASHA) Technical Report on Childhood Apraxia of Speech are as follows:

"There is emerging research support for the need to provide three to five individual sessions per week for children with apraxia as compared to the traditional, less intensive, one to two sessions per week (Hall et al., 1993; Skinder-Meredith, 2001; Strand & Skinder, 1999)"

and

"In view of the Committee's information indicating that children are being enrolled for treatment of CAS at increasingly younger ages, careful consideration should be given to the length of the therapy session. If repetitive practice of speech-motor patterns is targeted in a therapy session, many children in the younger age ranges can remain engaged for only a maximum of 30 minutes per session."


I’ll let you know how the meeting goes.

Timeline

Over Thanksgiving I had a conversation with my mother about how Michael had started to catch up by the time he was Ava’s age. And as a contrast, Ava had plateaued. In fact, she was choosing to use more and more gestures rather than trying to use words to communicate. After that holiday it was going to be time to start making phone calls.

The week before Christmas Ava saw a private speech therapist for the first time and she agreed that Ava looked pretty apraxic. This was when the depression kicked in. I couldn’t hope that I was just an overly concerned speech pathologist mother any more. I spent a week crying most of the time that I wasn’t directly interacting with my kids. Then holiday preparations kicked in and I was too busy to obsess over it. Next, we visited family in another state for 4 days. If you’ve ever traveled 12 hours in a car with a 1 and 3 year old you’ll know that it’s pretty much all absorbing.

The week we got back was Ava’s early intervention evaluation. She qualified which was great, but also depressing. So I spent another week or so in non-productive mode. Then I started blogging, which helped. And researching, which also helped. Now I’m in full-on productive mode. Two modes actually. I’m being productive as a parent of a child newly diagnosed with a speech disorder. I’m also being productive as a speech-pathologist who has acquired a reason to become knowledgeable about a specific disorder in her field.

To change or not?

Let's briefly digress to a totally different topic. Michael will be eligible for our local school district’s preschool program in the fall. Registration is at the end of this month. I can’t decide if we should switch him or not. Right now Ava and Michael both attend a local high quality day care two mornings a week. For the most part we’re happy with the program although it is expensive.

Pros of switching:

1. Well, first of all, it’s a lot cheaper. I could send Michael all five days a week for only a little over half of what his two days of day care costs now. Given that all these new therapy bills are coming in, paying less for preschool would be nice.

2. He’d be in preschool with his future elementary school classmates and have the opportunity to begin developing hopefully long term relationships and friendships.

3. He’d begin to get familiar with and comfortable with his future elementary school.

4. He’d be following an actual preschool curriculum rather than a daycare. He’d have to be more independent and follow a more structured routine. This would start to prepare him for the transition to kindergarten early.

Cons of switching:

1. Purely logistically, it would be a mess. I’d be dropping kids off at two separate places at two different times and the same for picking them up. They can attend daycare any time between 6:30am and 1pm. The daycare feeds them both breakfast and lunch. So I drop them both off together at about 7:45am and pick them both up at 12:15pm and the school’s taken care of two meals for me. If I switch Michael I’ll need to feed him, but not her breakfast. Then drop her off at 7:45 and drive to the preschool and drop him off at 8:15. Then I’ll have to pick him up at 11:15 and take him home and feed him lunch. Then put him back in the car to pick Ava up at 12:15. If I wait one more year to switch him to the school district’s preschool, they can both make the transition together. He’d still have a full year of preschool at the local school district before starting kindergarten.

2. He likes his current school. He likes his teacher. He likes the more nurturing atmosphere of the day care. I like the idea of more free play and less structure. He’s mature and smart and articulate for his age, but he’s still just a three year old boy and I think he deserves another year of play.

So, there it is. Decision needs to be made in the next week. I’d ask for opinions, but I’m pretty much the only one reading my blog and I don’t know what my opinion is yet. :-)

I’ll probably end up registering him just to reserve a spot. Why make a decision today when you can find a way to postpone the decision for several months? I can always decide not to switch him in the fall. I’d just have to be willing to give up the $50 deposit. Then the question is how many days? Definitely not all five, the question is 2, 3, or 4?

Emotional Journey

By nature I have a pretty cheerful, positive personality. I use that energy to spend positive days at home with my children and in my dynamic with my husband where my more bubbly personality tends to raise the energy in the household in a positive way. When Ava qualified for early intervention services with a likely diagnosis of apraxia it hit me hard. I was depressed and on the verge of tears pretty much every waking moment. It made it difficult to be a good parent to my children and changed the whole tone of my interactions with my husband. Here I wondered how long it would last before I’d be able to think past the fear and sadness of the diagnosis and become a little more functional and a little more myself.

Well, it turns out that for me the worst of it lasted about 2-3 weeks. Blogging helped actually. Normally I’m a hide my wounds and lick them in private kinda girl, but talking about everything both online and off has helped a lot. I think the holidays helped too simply because I was too busy to obsess.

I’m also consciously avoiding lines of thought that aren’t productive. Any train of thought that goes something like, “What will school be like for her? or How will she make friends if she can’t talk to them? or I think she’d be closer to her brother if only they could talk to each other. or Will she have the language and reading problems that often accompany apraxia when she gets older?” gets cut off immediately. I don’t know yet how she’ll respond to therapy or how fast she’ll progress. It just doesn’t make sense to worry about tomorrow’s possible problems when there are enough things to deal with today. I can handle today’s problems. I can work out solutions. I can’t do anything about fears for things that –might- happen in the future.

So now I’m in a flurry of activity and I feel pretty good about it. It makes me feel better to have a list of things I want to accomplish and to actually be crossing some of those things off. In my next few posts I’ll talk about some of the things we’re doing and setting up right now.

Genes, Part 3

So, there you go. Same two parents. Two kids. Both children are smart, funny, beautiful, kind, healthy, and every other positive thing every parent believes about their own children. However, neither child has typical language development. And one has a pretty serious speech disorder that will probably change the rest of her life.

I tread lightly here because I firmly believe that what is right and obvious for me and my family is not necessarily right for everyone. If you make different choices I applaud you for them and pass no judgment on them simply because they are different from mine.

Having said that…. Having a child with special needs is a situation I need to devote a significant amount of resources to. Those resources include emotional ones, financial ones, and time. I always felt that two children were enough for our family but I’ll admit that I was sad to think I’d never be pregnant or nurse an infant again. I might have considered more children at some point. Now I just can’t. All my resources need to go to the two children I already have. And that would be the case even if I could get some guarantee that my next child would have typical development. And doesn’t that seem unlikely.

And so I find myself in a rather common human condition. I didn’t really want more children. Not really. But I certainly didn’t want that choice to be taken away from me. And even if it is irrational, I feel like the set of circumstances I find myself in has taken that choice away from me. And I resent it. It’s irrational, but still, that’s the way I feel.

Genes, Part 2

So, Ava arrived about 15 and a half months after her brother. My pregnancy with her was also completely normal and full term. Her birth was also natural and uncomplicated. My mother, who was in the delivery room, said that she felt that Ava spent a little more time than normal before getting her shoulders out. I pay attention to this only because my mom was a practicing ob/gyn nurse 30 years or so ago. However, when I mentioned that to my ob later, he said that he thought everything was fine. She was a healthy 8 lb, 12 oz. baby. She also had severe newborn jaundice which was treated well and cleared up in under a week. She wasn’t an easy baby, but she was easier than her brother. She had reflux for which she was medicated for the first year of her life or so, but that’s the only medical history of note. She was more interactive. She made some vocalizations. I don’t remember what exactly, but I remember that it was “more than Michael did at her age, and look how he turned out – she’s fine.” She didn’t have any of the unusual staring at lights or fascination with screws type behaviors. Her eye contact and turn taking were more appropriate as well. I was just so relieved to not have a repeat of Michael’s first 15 months that I didn’t really take her red flags seriously enough. Because in retrospect, they were there. If you remove the lens of “this is better than Michael, so it’s all going to be ok”, there was plenty to be concerned about on her own merit.

Yes, she had more vocalizations than Michael, but they weren’t enough, at the right age, or of the right types. She had a few vowels, but almost no consonants. No sense of vocal play. No reduplicated syllables. She didn’t imitate at all. Even though I’m a speech-pathologist, I’ve never raised a baby with typical speech development. Therefore, I didn’t really appreciate how behind her babbling was. She had a few “words” at her 18 month pediatrician visit. We thought she had an approximation for Michael and one for kitty. I don’t remember the rest. They pretty much all disappeared. By the time I called First Steps at 21 months of age the only words she used regularly were “yeah”, “da” (that), and “mo” (more). We’d also occasionally hear “uh oh” and “ha” (hot).

At the 18 month pediatrician visit, she seemed to be trying, and I was still entrenched in the she’s almost where Michael was at this age and he turned out fine mentality. Three months later she had lost what little she had and the lack of progress at a time when she should have been starting to talk more and more triggered enough concern that I couldn’t keep my head in the sand any more. And I started to make phone calls.

If it hadn’t been for our experience with Michael, I’m pretty sure I would have had Ava evaluated months earlier. So be it. We all do the best we can.

Genes

Well, my husband is my perfect partner. That sounds terribly sappy, but it’s true all the same. I would not trade him for anything. I think we combine in a way that makes amazing, sweet, smart, kind children. However, those children do not have typical language development.

Ava has been the main topic here because we’re dealing with her diagnosis of apraxia, but that story actually begins with Michael. My pregnancy with Michael was completely normal and full term. Natural, uncomplicated birth. Healthy 8 lb, 6 oz. baby boy. He did have rather severe newborn jaundice which wasn’t well treated, but that’s a story for another time. He screamed for months. I kid you not. Somewhere 6 months in or so I remember asking my husband if he would ever be happy and awake at the same time. I was worried even then. He didn’t make eye contact. He was more interested in the lights or ceiling fan than in faces. We didn’t get the smiles or coos. There was very little interaction. Almost no babbling. He didn’t even make vowel sounds until 8 months of age. When he’d play with toys he was more interested in the screws on the bottom of the toy than in actually playing with it. He wasn’t interested in turn taking games like pat-a-cake. Red flags were everywhere and a speech-pathologist I saw them. But I was a new mom and insecure, and no one else seemed to be listening.

He had no words at his one year pediatrician visit. Our pediatrician told me if he didn’t have three words at his 15 month visit we’d begin testing. He had three- barely - at that visit and they all had come in that week. (Ava was born, incidentally only 2 weeks after that 15 month pediatrician visit). When he did begin talking, his first sounds were very atypical. He had /k/ and /g/ and enjoyed making clicking sounds with his mouth. I was very concerned. And about more than just his speech.

And then it just clicked. The words came more and more quickly. Ten words, then 50, then more than we could count. Two to three word combinations came between 20-22 months of age and he was using 3-5 word sentences at two. At three he’s pretty much completely intelligible to strangers and using long sentences with complex structures and vocabulary.

It was our own little miracle. A breathtaking relief. And the experience completely colored the way we looked at Ava’s development.

Expanding Horizons

My son is a little over three years old. I am watching him explore his world and his place in it. It’s extraordinary to watch his world expand little by little and see him gain confidence. We waited a long time to switch him from his crib to a toddler bed simply because he was so happy in his crib. He would play happily for an hour before falling asleep and another hour after he woke up before he would call for someone to get him. He slept well. We didn’t see any need to change that prematurely. However, as he approached his third birthday we decided to make the switch and he was excited about it. It made me a little sad though that I would go up to get him an hour or so after he woke up and find him still in the bed. It didn’t even occur to him that he could crawl out on his own.

Then one day it just happened. He left the crib. And chaos ensued. He’d still happily play in his room…but for two or three hours. And never fall asleep. Overnight he went from taking two and a half hour naps to no naps at all. I loved that he was enjoying a new level of independence. I was still essentially getting a break in the afternoon since he happily spent all of that time in his room, but he still needed the sleep. I finally found a solution. I let him play for anywhere from 30 minutes to an hour and then I go sit in a chair in his room. That effectively pins him to his bed and he falls asleep within 10 minutes. And sleeps for at least 2 hours.

Concurrently with all of this we’ve been potty training. He’s been day trained for quite some time, but he began showing interest in taking himself to the bathroom rather than going in his nap/bedtime diaper if he was awake. So we told him that if he needs to go to the bathroom he can leave his room and do that quietly and return to bed. A whole new level of chaos has ensued. Minutes after leaving the room doors begin to slam and running feet can be heard. Last night we put him to bed at 8pm and he was still awake when I was going to bed at 10:30. And that time is now spent entering and leaving his room. Another favorite is peering down at us from the upstairs balcony in a manner he thinks is quiet. I have no idea what he thinks he is doing, but he also goes into and out of his closet slamming the sliding doors open and shut each time. Feet thunder back and forth over our heads.

I love the independence and exploration. I love that his world had grown from the confines of his crib, to toddler bed, to his room, to the areas outside his room. However, I miss the beautiful sleep. And I’m pretty sure he does too. I’ll give him a week or so to see if the exploration grows old on its own, but if not I guess I’ll have to do the sitting with him trick at night time too.

Jealousy

I didn’t start reading blogs until I had children. Then I found several that I enjoy. I enjoy them because it’s nice to know that I’m not alone. And they’re often funny and well written. Now I’m experiencing something new – jealousy. A mother in a blog I follow just had her youngest turn two. Among many other things she mentioned that he’s talking in two to three word sentences. I want that for Ava too. More than I can say. I don’t like feeling jealous. It’s not an emotion I identify with myself. I think it’s something I’m going to have to make peace with though. It’s part of my future.

Hula Fail

So my mom got me a weighted, adult-size hula hoop and instructional dvd for Christmas. I had asked for them on a whim. I had never actually used a hula hoop successfully before, but I’d never had an adult-sized one before either. Supposedly the bigger it is, the easier it is.

So, I tried it. I’m terrible at it, but I had fun. I managed about 30 seconds to a minute at a time over 15 minutes or so. The next day I was bruised. Seriously! Bruised. So, there was a three day break while I waited to heal. The next time I tried it I was a little better. I could hoop for say, 45 seconds at a time to maybe 2 minutes at a time. Again, over a 15 – 20 minute time span. The next day – more bruises and another waiting period.

I’d really like to hula hoop for fun and fitness. I find it to be a mood booster. I could use a mood booster. But at the rate of 15 minutes twice a week I don’t see much progress happening. At least I do see a little bit of humor in the situation.

Symbiosis

Ava and I are like two halves of a communication whole. When it comes to common routine things I almost always know what she wants and what she’s trying to communicate. I know that she wants a snack when she gets up from nap. Usually we go through a question and answer routine. Do you want a banana…some yogurt…some milk…etc? She’s remarkably eloquent with intonation and vowels. I wonder if my ability to read her and to facilitate her communication is a mixed blessing. I’m pretty sure she’s less frustrated than other kids with her level of verbal skills because I’m so good at helping her. However, she’s reluctant to spend time with anyone but me. Also, she may not try as hard to verbalize because she doesn’t have to.

Recently we’ve begun teaching her sign. We also put up a communication board with the most common things she wants from the kitchen on the wall in the kitchen. I’m expecting her to actually ask for what she wants in one of those two ways (usually accompanied by a verbalization) instead of just guessing until I get it right. I think she likes it. She’s excited about being able to ask for what she wants using the communication board. She’s spontaneously using the signs for milk, please, and help. It’s really a lot of progress for only about a week of using these interventions.

There’s just so much more locked in that little head. She’s almost two. She should have at least 50 words and be using 2-3 word phrases. I don’t know that many signs, and our communication board only has 8 pictures. You can just tell that she’s wanting to communicate more complex thoughts and just doesn’t have the tools to do it. I wish I were fluent in sign so that I could open up a whole different method of communication for her. I want to hear what she has to say. I don’t care right now how she says it.

Schedules

The rhythms of life as a stay at home parent have gone through such distinct stages. There’s the sleep deprivation / breastfeeding stage where night and day blend together as do the days of the week. All time is the same. It drove me crazy a bit. And with my two babies only 15 months apart, in some ways I felt like I spent two straight years in that stage.

Next there was the stage of two toddlers. This was actually quite nice. I liked it here. The days and nights become distinct again. Days start to have regularly scheduled appointments like nursery school two mornings a week. Regular playdates are set. Conversations begin to return with adults aside from your husband and on topics other than the feeding, sleeping, changing, and development of babies.

And now there’s something new. Parent of a child with special needs. I’m barely starting this and I’m realizing that appointment are beginning to be difficult to keep track of. There’s school two mornings a week. Two half hour therapy sessions a week with the private therapist. The IFSP meeting coming up. The hearing test coming up. Then we’ll be scheduling the first steps therapy session(s). That will probably be once a week for an hour which is their typical schedule. I’m going to try to advocate for half hour sessions twice a week though. It’s better for kids with apraxia and I have the citations to prove it. I doubt any speech-path knowledgeable about apraxia would argue the point, but sometimes practicality wins. They serve you in your home. If you factor in driving time, you are asking them to fit in extra time into a busy schedule serving other families too. It can’t hurt to ask though, right? So that will bring us up to three or four therapy appointments a week. Plus two mornings of preschool. We also have two regular playdates. I hate to let those go, but I begin to wonder where we’ll fit it all in. The kids still nap in the afternoon. And don’t they get to just hang out at home any more? Balance… does it even matter? Or is the therapy more important?

Family.

Well, yesterday’s post must have been cathartic somehow. I managed to do some web browsing last night on the topic that was fairly productive. There’s a lot of good information at the www.apraxia-kids.org website for both parents and therapists and I spent several hours browsing both sections. It’s a start I suppose. I stayed up way too late and then had trouble falling asleep so I’m glad this morning is a preschool morning for the kids.

I was feeling pretty good about having been productive and managing to avoid the emotional black hole of the mental pathway that begins with the desperate wail….. ”But what about her future!!!” Then my dad called. My parents are wonderful. They live five minutes away and have been taking Michael for one night every weekend since he was about two months old. When Ava was born they started taking turns. One weekend they’ll take Michael and the next they’ll take Ava. My children have the blessing of being extremely close with their grandparents and we have the blessing of getting regular one-on-one time with the kids. Usually communication in my family goes along the lines of my mom as mediator. I’ll talk to my mom and she’ll talk to my dad. Or dad’ll talk to mom and then she’ll talk to me. My dad and I have a great relationship, but I just talk to my mom more often.

Well, yesterday afternoon I called my mom and gave her the good (she qualifies) and bad (she tests like a 6 month old) news. Mom was upset, but supportive. I was upset, but avoided a complete meltdown. Additional details aren’t really necessary. To be honest, I didn’t even really think about whether she’d discuss it with dad overnight.

So his call this morning was a complete surprise. He just called to personally say that we have his complete support. That Ava’s a wonderful girl with a family that loves her and we’ll all travel this path together. The call was relatively brief, completely unexpected, and touching. And now I’m a complete mess again. This experience is such a roller coaster.

This can't be happening to her.

My daughter isn’t talking. Well, she isn’t talking much. Warning bells have been ringing in the back of my head for months, but I ignored them because her older brother was a late talker too and now is significantly above average at just a little over three. Whenever I would express my concerns to other people, they’d just say that she was fine. She obviously understands everything said around her and her brother turned out fine, didn’t he? So I waited, and waited. I just wanted it to “kick in” so I wouldn’t have to worry any more.

The funny thing is that I’m a speech-language pathologist. I know how normal speech development works. I knew this was different. But I still procrastinated convincing myself that I could wait because everything turned out fine with Michael.

Finally I just couldn’t wait any more. I started making phone calls about a month ago. I called her pediatrician. She told me to start with a hearing evaluation. It’s scheduled for the end of January. Two months to confirm what I’m pretty sure I know – she can hear. Found out that our insurance doesn’t cover speech therapy for children unless they had it and lost it (like with a head injury). Started her with a private therapist who agrees that things aren’t right. Twice a week for 30 minutes. Seems like so little time to try to fix so much.

Called Missouri’s First Steps program. This is the program in Missouri that serves the birth to three population. They scheduled an evaluation, but doubted she’d qualify. In order to qualify, she’d have to score as low as a child half her age – 11 months on a language subtest that combines how she understands language as well as how she speaks language. Well, she understands just fine which was bound to bring the score up. I scheduled the evaluation anyway. At the very least she’d be evaluated by someone with a lot of experience with little ones who could confirm my concerns even if she didn’t qualify. I called the local university’s speech clinic and investigated the possibility of her being seen there. Anyway, I made a lot of phone calls and set up a lot of appointments. Then it was the holiday season and things were so busy I escaped for a while.

What I can’t seem to do is think about the situation on an emotional level. Every time I try to think about the fact that my baby has a severe speech delay I just completely break down. Which is completely useless and unproductive. I’m a speech pathologist. Who better to try to help a child with a speech delay? And I just can’t seem to do it yet. I need a clear head to research and plan goals. I need a clear head to sit down with her and work with her like a professional rather than an extremely upset mom. And I just can’t. And I feel incredibly guilty about it. Ever since making the phone calls I’ve been trying to just tune out. Try not to think about it. At least it keeps me functional as a parent who’s the primary caretaker of two small children.

Today was her first steps evaluation. Good news is that in every single area except expressive language (speech) she’s above average. Tests at 2 years of age or older. Bad news is that she scores like a 6 month old on the language portion of the test. 6 months old!! That’s nearly a two year gap between her ability to talk to people and everything else. She’s not even two years old yet.

And unofficially, it looks a lot like childhood apraxia of speech. Which I knew. I’m a speech pathologist, of course I knew. But it sucks to have someone else agree. No one would officially diagnose her at this age. But she’s normal everywhere else. No sensory issues. No social issues. So few consonants (only two). So few vowels. No imitation. No vocal play. I suppose I should just be grateful she’s going to qualify for services. And I am. Really, I am.

But I’m mostly just incredibly sad. Not for me. Just for her. I’m terrified of a future in which my bright, cheerful, independent, sweet girl cannot express her thoughts and feelings to the people most important to her. Of how peers and school will treat a little one who continues to be silent when all around her are talking. She’s so smart and no one will know. How will she continue to keep up when she doesn’t get to participate in conversation with her family? She can’t ask questions about things that interest her. She can’t comment on things she thinks are funny. She can’t ask for help. She can’t tell us why she’s sad.

And I have to help her. I have to. It’s my job. I’m her mommy. And I can’t yet because my emotions won’t cooperate. When does it get better? When does this stupid diagnosis stop being the only thing I think about all day? It’s there when I get up. It’s there when I’m trying to go to sleep. It sneaks up on me during every quiet moment of the day.

I’d love to come up with some succinct summary of this mess, but I simply don’t have anything else to say right now.