Year One

One year ago Ava was evaluated by early intervention. She was 22 months old. Her language scored at the level of a six month old baby. She had two consonant sounds and perhaps three or four vowel sounds. She had only about 2-4 word approximations she used regularly. She had mostly stopped trying to talk.

My emotions were a dark and tangled mess. I couldn't stop thinking about Ava's speech and the outside confirmation that something was wrong. I was fighting tears all the time. That night I sat down and wrote the first real post of this blog. Even today, one year later, my stomach still twists re-reading that post.

I just needed to write it all out. It was a tool to help me cope. I was too upset to talk to my loved ones. I couldn't talk without breaking down. So I wrote it down instead. No one was reading the blog then. No one at all.

Since then, others have joined in. Other parents. Other professionals. Other people who are interested in my family and the things I share. I appreciate all the voices that contribute. I appreciate all of you who read regularly and those who just stop by.

So much happens in the first year. There's the initial flurry of activity. First there is the evaluation. Then you have follow up testing and finding the right services. In our case we combined private therapy with the services provided by early intervention. We made our way through the first IFSP.

I feared the worst. I feared severe motor planning problems and little progress. I made communication boards and they went up at our house and at my parents house. We made a list of ASL signs that would be useful in our daily life. My husband and I learned them and then taught them to my parents. We all used those signs consistently with her for the first couple of months.

Ava was almost instantly happier. She loved the communication boards and was obviously empowered by them. She picked up signing almost instantly. Oh the power of the sign for "more". She also liked "please" and "up". And then she started vocalizing "uh" when using the sign for up and progress just flowed from there.

Services began. Sounds unlocked and words came. For us, progress came quickly at first and I was so grateful. The inevitable plateau came as well, and that was all right. At least she could communicate now. Not clearly, but we had so much more to work with. I had gone from wondering if she would ever be able to talk to worrying about clearing up the sounds in her speech. Those are two entirely different kinds of problems and I was grateful to move from one arena to the other.

At the six month IFSP meeting we identified additional needs in the area of occupational therapy and began OT services as well. Another miracle. Progress was swift again and perhaps kick started speech progress because we started seeing progress in her speech again as well.

As this first year came to a close we also participated in a transition meeting, because early intervention only lasts through the age of three. Ava was evaluated by the schools for eligibility to continue to receive services. She qualified.

I wish I could travel back in time one year and whisper in my ear. "It'll be ok." We are ok. There's still work to be done, but the journey is happening one little bit at a time and is manageable. We still live life and enjoy it every day. Working on Ava's speech is just one part of a complex whole.

One year later we have words, sentences, and conversation. More importantly, we have laughter, love, and family.

Pre-IEP Preparation - Thinking Through Options

Technically, an IEP meeting needs to be held within 30 days of the evaluation. That means it should be take place before the 15th of this month. On top of that, I should have at least a 10 day notice about the meeting date. I should hear from someone this week regarding setting up the meeting.

Before I meet with anyone I need to figure out exactly what I want. I can't advocate for something if I don't have the specifics worked out clearly in my mind.

I'm also in an odd position of having been on both sides of this table. I worked as a certified SLP in the schools. I know how busy they are. I know that this first meeting will be the very beginning of a long relationship with people I hope to respect. I want these people to be active partners in my daughter's education. Ideally I want our relationship to be friendly and productive rather than adversarial.

And so, I want to push for enough services, but I don't want to be unreasonable. Many children with CAS need one-on-one therapy with their school therapist. However, I know that I am working with Ava one-on-one five nights a week and we pay for private therapy with a local expert twice a month. Also, as compared to many other children with CAS, Ava's motor planning problem is relatively mild. I don't think I am going to push for individual therapy time.

The other service options will probably include pull-out group therapy for a specified number of minutes a week, services provided in the schools special needs preschool classroom by that room's classroom teacher, push-in services by the SLP in that preschool classroom, or some combination of some or all of those services.

The biggest decision I need to make is whether I want her to go to the special-needs preschool classroom. If she does not, I'd still send her to that school in the fall. I would simply send her to the same preschool room Michael is in now. Her SLP would be able to pull her out of that room to provide small-group therapy, but she'd receive no extra services in the room. The advantage to this is that she'd be in the least restrictive environment surrounded by typically developing peers.

Alternately, in the special needs classroom, there would be fewer children and more adults. The adults are trained to facilitate communication, social interaction, and sensory integration. Ava would be enabled to participate fully rather than allowed to float around the edges. The teachers would have the time and training to listen to her and work to understand her conversation rather than simply say, "uh-huh" and move on when she's difficult to understand. At least, these are my hopes for the special-needs classroom.

I think I'm going to try to contact the school and that teacher and see if I can take Ava into the room for an hour or so to play before the IEP meeting so I can get a sense of the dynamics of the room, the other children attending, and how Ava fits in. I'll feel better about knowing what I want after that. Once I know what I want, I'll be able to plan more concretely for the IEP meeting.

Excellent CAS Resource Page

I haven't had a chance to fully explore the links on this page yet due to a particularly nasty stomach flu bug I brought back with me from New Orleans.

However, at a glance, this page looks wonderful and given its depth, is likely to have something you haven't seen before.

Childhood Apraxia of Speech Resource Page by Pediastaff