Wednesday, February 4, 2009


Little Guy had his ECI intake evaluation and IFSP (Individual Family Service Plan) yesterday. I'd been gearing up for it for a while, and working on preparing myself for all the work that would lie ahead. I knew I had a lot going for me because I already knew the team that would be set up for him, with the exception of a new itinerant deaf ed. teacher. But, just the thought of all the hours and hours of work was weighing heavily on my mind.

Before they came, I started practicing what I knew I needed to say. I had to practice it because what I was going to say to them is entirely out of character for me. That said, I knew the fact was that I needed to say it.

Finally, the time came and they all showed up. Ms. Francis from the school district was there. She's been the Beast's Deaf education teacher since he was 11 months old. She won't be Little Guy's teacher, but the teacher assigned to him was out sick. I was okay with that. The familiarity of having Ms. Francis there was actually really helpful and relaxing. Snort's nutritionist had already done her evaluation, so she wasn't in attendance. Snort's occupational therapist was there. Pretty's speech therapist was there, too. Lastly, Jo was there. Jo is a really special person to our family. She was the Service Coordinator for the Beast starting from when he was about 11 weeks old. She oversees all of Pretty and Snort's services, and will be taking charge of everything for Little Guy, too. She is making other plans for her life and may not be with ECI for much longer. But, I really do believe God put her in our path at this time for a reason. I really needed it to be her who helps me find my wings and fly, and I think she'll do just that before leaving.

The evaluation began and there were papers and questions flying everywhere. Teresa (OT) assessed his motor skills. Right on target! (Not that you can be too horribly delayed when you're only five weeks old, but that's okay). Jan (speech) did her assessment, too. Again, right on target for five weeks old. Ms. Francis was the last to do her testing/questioning. All were pleased to announce that, for now, he's right on target.

After the assessments were done, it was time to move into the IFSP portion of the meeting. At this point, Jo turned to me and said, "What do you see as your family and Little Guy's needs from us?" I could feel myself sweating and my heart racing just a little bit. I was almost fighting off tears at what I was about to say. I looked her and every other person in the room straight in the eye and was brutally honest. "I need this to be as minimal as possible. I usually handle stress so well, but I'm not handling it so well right now. Between Little Guy's reflux and RSV, and Snort's horrible asthma attacks, and all the doctor appointments, and the Beast's hearing issues and behavior at school, and anything else you can think of, I'm spread too thin. And I'm going to snap if I haven't already. So, I need to keep his services to a minimum."

There! I'd said it. And I felt better for having said it. I know that none of that sounds like anything out of this world. But, those of you who really know me also know that I usually will just pile it all on whether I have time for it or not. I would normally set him up for OT services monthly, speech almost monthly, service coordination weekly, Deaf ed. weekly, and anything else that was suggested. So, for me, this was a huge thing to say. Jo gave me a knowing look, almost relieved. She knows me well, and I think she probably agreed that I was at some kind of breaking point.

So, we went from person to person and decided what level and frequency of services would be needed. Jan comes to see Pretty twice monthly. She promised me she'd observe Little Guy while she's here and let me know if he's falling behind. So, he will have one scheduled visit from her in the next six months. Teresa comes to see Snort once monthly. She also promised to observe Little Guy while she's here and offer tips to help him out and to let me know if he's falling behind. She also is scheduled to meet with Little Guy once in the next six months. Suzanne (Snort's nutritionist) sees Snort once monthly, too. I'm not sure we set up how frequently she'll see Little Guy, but it will be minimal as well. Jo sees Pretty once a month and she sees Snort once a month. So, we set her up to work with Little Guy once a month, too. She didn't have to promise to tell me if he's falling behind because I've worked with her before. I have a perfect knowledge of the fact that she always lovingly speaks up when one of her children needs something. Lastly, we discussed services from our itinerant Deaf ed. teacher. She will be coming once a week. Again, I was proud of myself because I said in no uncertain terms "I need her to come with information that will help us. I don't need to be taught what a hearing aid is, or what a cochlear implant is, or the difference between Deaf, deaf, and Hard of Hearing. I need her to help teach Snort and Pretty about Little Guy's first language (ASL will be his first language. Speech will come eventually, but communication needs to come as soon as possible). I need her to give me a sign language refresher course, too". Ms. Francis nodded in agreement, and that was it.

The last portion of the IFSP is the part where the service coordinator asks what the family needs in order to meet all the needs of the child in question. Jo, being the by-the-book SC that she is, asked this question. My answer was plain and simple: "I need things to feel normal. It doesn't need to be normal to the rest of the world's standards, but I need things to feel normal for our family". Jo knew just what I meant without saying another word. I have every ounce of faith that things will feel normal again soon.

I created this blog in an effort to share our experiences with other parents who are just starting the journey with their own children. Having been there and done that once before, I felt like I'd have a lot to offer in terms of experience and understanding. But, I'm realizing that I am often learning many things for the first time, too. I've always known that ECI services are all about meeting the needs of the child and the family and about empowering parents to be adovocates for their child. What I learned this week is that ECI is also about empowering me to advocate for myself. After all, I will be the greatest teacher my child ever learns from. If I allow myself to become overextended and somehow "broken", I won't be all that affective of a teacher, will I?


  1. Hi. I just wanted to recommend The Signing Times videos. If you don't know about them already(I am sure you must) My kids LOVED them, Plus I got to learn with them. My children both have perfect hearing, not so good listening. :) But I make sure my kids will also be able to communicate with others. Its a wonderful series and you can borrow them from the library.

  2. I LOVE Signing Time, too! We had the whole collection at one time. (Though there have been many more created since then). One of my favorite memories was of having dinner with Rachel Coleman (creator of Signing Time) and her family. I'm with you. Signing Time is the BEST way to teach chilrden about sign. And the songs are way too much fun, too.

  3. GOOD FOR YOU!! I know that was incredibly hard for you to do, and I think you'll be blessed for not just piling too much on your plate.

  4. I am so proud of you. That must have been so difficult for you, but oh so necessary. Your children are so blessed to have you.
    Thinking of you,