Early Childhood Intervention evaluation

The ECI evaluation is a state form called Developmental Assessment of Young Children (DAYC), and it covers five areas of development. Brooklyn had her evalutation yesterday, and it took about two hours. In order to qualify for services with ECI, Brooklyn would have to show a "significant delay" of at least three to four months in at least one of the five areas. She is 18 months old, and in an ideal world, she would score as an 18 month old on everything. But it's not, and here is how she scored out:

1. Cognitive - 21 months
2. Communication - 13 months
3. Social-Emotional - 11 months
4. Physical Development - 12 months
5. Adaptive Behavior - 12 months

So. "Significant delays" in four out of five areas. I really, really did not expect that, and it was like a punch in the stomach. Delays in one or two areas that overlap, yeah, okay, I understand that. But four???

The way that they explained it to me is that most of the problems go back to speech - that Brooklyn doesn't have a word for anything that she wants, that she doesn't initiate using words, that she doesn't show us what she wants or needs with speech or gestures. When she wants something, she gets very upset and just cries and screams, and we are just left to try to play the guessing game about what has her so upset. A major goal is going to be to teach her words and signs to show us what she wants to reduce her frustration and make things happier for everyone.

I know that my baby understands a whole lot of what we say but just can't say it herself, but yet the low "adaptive" score comes from her not understanding what things like "put the block ON the table" or "put the cup IN the bowl" mean. Also, that she doesn't play in "repeated sequences," such as rock the baby, feed the baby, burp the baby....three or four repeated things in a row. I think she seems awfully young to be doing things like that, but what do I know. I cried when she explained this part to me, because it makes me feel like I haven't been doing enough to teach Brooklyn things she should know at her age. The guilt I feel over this is ridiculous. I feel like I have failed my daughter, like a lazy, sorry-ass, unworthy mother.

There were a few things that made her score low that I honestly didn't agree with...like on the Social-Emotional section, at her age, they wanted her to prefer one parent over the other for things like feeding her, changing her, etc. She doesn't. The only thing is that she only wants me to read to her. They considered it a negative that she didnt have a favorite parent for these everyday tasks. That seems strange to me.

The good news from yesterday was that the speech therapist said that she saw NO signs of autistic behavior whatsoever. Thank you, God!!!!

For now, we will have a visit from the speech therapist once per month, the developmental coordinator once or twice per month, and the physical therapist has not contacted us to schedule anything yet. Every six months they will re-evaluate and see whether she is making progress.

The speech therapist said that this differs from a lot of programs where parents take their children to therapy twice per week or something like that. They visit less often and focus more time on teaching the parents strategies to use at home with the children so that the children can be benefiting from the therapy constantly, not just a couple of hours per week. I like that idea. I wonder if the physical therapy is going to be the same way. I honestly worry about that, because when I was supposed to do physical therapy stretches on Brooklyn's neck when she was an infant, it seemed to cause her so much pain that I could not do it. I cried more than she did.

Anyway, we did some initial goal-setting, and the speech therapist gave us just a couple of strategies to start using with Brooklyn at home (giving her simple choices, naming everything).

And that's where we are at right now.

ECI intake and Pedi visit

This time last year, it was pretty normal for Brooklyn to have tons of appointments, but our calendar doesn't usually look like this anymore! Anyway, I have a lot to catch y'all up on. This past week, Brooklyn had her Early Childhood Intervention (ECI) intake appointment, an appointment with Dr. A, and her evaluation with the developmental specialist and speech therapist from ECI (I'm going to do a separate post on the ECI evaluation.) And tomorrow she sees her pulmonologist, Dr. G2.

Wednesday, 9/9 - ECI intake.
It took about six weeks to get this appointment for Brooklyn. I did a self-referral on the advice of a friend who is a nurse back when Brooklyn was not speaking at all.

The developmental coordinator came to our house Wednesday. She had told me over the phone that the intake would take about 20 minutes and that we were going to go over my pregnancy, Brooklyn's birth, her medical history, and her development. I thought it was really funny that the lady thought it would only take 20 minutes to go over all of Brooklyn's medical history...and I was right, she was there for over an hour.

Brooklyn warmed up to her immediately and really seemed to like her. She didn't determine Brooklyn's eligibility for services or anything at that point, it was strictly an information-gathering type of appointment. She told us she would return with the speech therapist to evaluate Brooklyn the following Monday. She also took note of Brooklyn's head tilt and said that she would talk to their physical therapist about the possiblity of coming to evaluate Brooklyn at the same time as well.

One thing that I think is really great about ECI is that they are going to come to our house for everything...so, no other kids, no waiting rooms, no germs, no sickies!!!

Friday, 9/11 - 18 month appointment with Dr. A, Brooklyn's pediatrician.
Brooklyn weighed 20 pounds, 10 ounces (5th percentile) and was 31 inches tall (almost 25th percentile). This showed up as a weight loss of almost a pound since last month. But I told Dr. A that there had been a different nurse there at our last appointment, and she had Brooklyn stand on the older kids' scale fully clothed, instead of laying her on the baby scale in her diaper like they normally do. Dr. A said that the substitute nurse should have listened to me when I tried to tell her about how they normally weigh Brooklyn, so he marked last month's weight as "falsely elevated."

Dr. A said that Brooklyn's weight gain is not great, as usual, but it is "adequate." We will keep her on 2 bottles of increased calorie formula per day for now to help her gain weight.

He was very happy, as of course we are, that Brooklyn is starting to say some words again. She has about eight words she says now (baby, bear, bink, bib, ball, yeah, this, eye, dada...oh, UPDATE...this weekend marked the return of MAMA!!!!) He was very encouraged that she is making progress again, and said, "I don't know what happened to make her regress like that. To be honest, we'll probably never know what happened." According to his standards, Brooklyn is almost back in the range of normal speech for her age.

We told Dr. A about the ECI evaluation that we had scheduled. He really doesn't think that speech therapy is all that helpful in children younger than two, but definitely doesn't feel like it hurts. He thinks that ECI will be able to help Brooklyn more with her head tilt than with anything else. He does think she needs some physical therapy for it at this point. He said that she can correct it for short periods of time, she just usually doesn't. Another thing that he said we will have to keep an eye on is that babies with head tilts can have vision problems - sometimes one of their eyes will not focus as well as the other eye because they don't look at things straight on. He said that around her second birthday, he will refer her to a pediatric optometrist to make sure everything is okay with her eyes, but right now, he doesn't see any signs of problems there.

Brooklyn had to get her Hib vaccine and her flu shot. I asked whether she would be getting Synagis shots again this fall and Dr. A said that he would call Dr. G2 to discuss it with him. He doesn't feel like RSV would be as detrimental to Brooklyn's health this season as it would have been last year, even though she has not outgrown her laryngomalacia. He is not sure how much our insurance would fight us over it either.

I guess we will find out more at Brooklyn's appointment with Dr. G2 tomorrow.