We’ve been working our way through the Early Steps process due to Stella’s lack of language. It took weeks to get into their system. Once “in,” I had an intake meeting scheduled rather quickly. From there, I had to wait to be contacted by the person who would actually do the evaluation (and I had to pick from a list blind, along with our would-be case worker). My understanding is/was, once evaluated, the intake coordinator along with our would-be case worker will contact me to set up yet another meeting to actually discuss the results of the eval and determine what, if any, services would be offered and establish goals. It’s a long and rather laborious system, made even more frustrating when you just want answers.
Our eval was finally scheduled for this past Friday. I thought I had it timed perfectly; we would go to the Little Gym in the morning, Stella would come home and rack out for an hour or two, eat lunch, and then be in a good yet mellow mood for the testing. Only she wasn’t in her usual post-gym euphoria for some reason. The eval started with the lady putting her gear down and Stella immediately trying to climb and/or steal it. Stella grabbed her pen and then had a total meltdown when the lady took it back. It kind of deteriorated from there. After a long series of questions for me, the lady tried to play/test Stella. She took all kinds of different things (cups, blocks, ducks, shapes) out of her box to see if Stella could perform certain tests. Stella thought a couple of the shapes were quite marvelous, and attempted to abscond with them. Another meltdown ensued and the lady kept saying “I can’t get this child to look me in the eye.” I wanted to cry. It just seemed like it couldn’t go more badly.
Then things kind of calmed abruptly. Stella started to perform and the evaluator was even able to go back and give her credit for things she wouldn’t do initially. Stella even made the sign for “baby” when she saw a picture of one in a book. Stella agreed to play “pee-pie” with the evaluator, although I’m not sure she got full credit; it seems you have to play pee-pie for a full minute (I told the lady that I’m a grown-up and I’d have a hard time playing pee-pie for a full minute). Stella also looked at the lady in the eye the whole time.
Then came the dreaded autism screening form – the extended form (vs the short MCHAT we had taken at the doctor’s office). I gotta tell you, this form is BS when applied to a 19 month old kid. You had to answer by comparing your child to others her own age (and frankly, I don’t get to hang out with a lot of 19 month old kiddos) and answering is your child no/slightly/very different than others. Most of these questions, I was able to confidently answer “no different.” The only ones that threw me were the ones asking about verbal language. Some questions were just stupid when taking age into consideration (i.e. potty training, cleaning up after themselves, making “appropriate social gestures with her peers”).
At the end, I asked the lady what her thoughts were about the autism thing. This has been the scariest issue for us. We feel like we can work with any language/speech issues. The lady said she honestly didn’t know, that there were some red flag indicators but a whole lot of behaviors that were contrary to the diagnosis – her social nature, her affectionate nature, proper emoting, etc… She felt that if anything, it would be a borderline score.
So now we wait some more. I am supposed to be contacted soon (hopefully in the next day or so) to set up the meeting to discuss the results and establish services. The evaluator kept saying “when” we set up speech therapy, so I’m assuming in her mind we meet the 25% deficiency threshold to qualify for service. She did agree (and I had already kind of determined this) that there seemed to be a receptive language issue. We’ll get the autism score in the mail and can decide what, if anything, to do from there. I have been given some contact info in case we want a real evaluation for this vs. a screening.
Personally, I feel like we may get a borderline diagnosis but that as we work on her speech, those red flag indicators will dissipate. Unless we get a shockingly high score, I don’t feel like subjecting us or Stella to a formal test. And damn it, I still have a whole lot of moments where I feel like there’s nothing at all wrong with her, and that she’s just being kind of stubborn. She has moments where she listens and you know she understands based on her behavior. She just chooses not to listen most of the time. She’ll talk when she’s ready. Regardless, we’ll take the therapy. It can’t hurt. I just want answers and for this endless waiting and seeing to come to an end.
And when she’s older, I’m grounding her for this. This has been a nightmare.