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.