So first of all, a big thank you.
I wrote one line last week about my youngest having his second early intervention appointment. One line. And I got the most amazing, most overwhelming support from my friends – both in person and in cyberspace.
I got the phone calls I expected that day, the ones from my mom and from my husband. But what I didn’t expect were the e-mails and comments and tweets (yes, I said tweets…sigh) from my friends here in town and across the globe. I can’t express how much that meant to me. It was so different from when I went through it with Howie and I knew only one person who would understand. To have so many others check in with me…I’m speechless. Thank you.
So, speaking of speechless…
It’s taken me a week to really be able to process our visit with the speech therapist last week. It was the same woman who evaluated Lewis in May, so she was very familiar with our situation. We were able to skip over most of the Michigan Early Intervention Developmental Profile and go right to the speech/language portion. She went through the test, trying to get him to use his words to ask for the puzzle pieces, the blocks, the animals…and got nothing. She tried to get him to repeat her words so he’d start talking. She tested him a bit, forcing him to ask for something before giving it to him. Nothing.
So since he wouldn’t talk, the therapist and I did instead. She asked me how many words I thought he had (about 20). She asked me how many of those words someone else could understand (about 10). And she asked me how many of those words that someone else could understand were also spontaneous.
Meaning how many did he say on his own without prompting, without repeating.
About five. Sigh.
The therapist wrote down a bunch of notes and asked Lewis questions. He could follow two or three step directions but wouldn’t say anything to her. I figured I needed to chime in here. He has words, I told her. I said I felt like I was walking a fine line telling her things, but I wanted to be honest. I want him to get help if he needs it, but I was afraid that by telling her the things he could do, it might change his score, leaving him ineligible for services. But I needed to give her the whole picture. It wasn’t fair to Lewis, to the therapist, or to the system if I didn’t.
So I told her everything. I told her he could count to 12, but wasn’t sure if anyone else could understand him. She asked to hear that, and as she listened, she shook her head. “I probably would have known he was saying ‘two’, but only because I knew the context”. I told her he knew all the letters of the alphabet, and tried to sing along with songs but no words came out. I told her that even though I knew he could say “Mama”, he never actually called me that. I told her that I know he understands everything, but he’s starting to get frustrated because he can’t get us to figure out what he wants.
The therapist told me she appreciated my honesty and understood exactly what I was saying. The counting and the letters, while great, isn’t really “speech” in her opinion. It’s just rote sounds back. She’s looking for labels of nouns, verbs to get his wants and needs across, and expressive language. She sat there and scored the speech portion of the Michigan while Lewis had a snack. Then she scored it again. And again.
She looked up at me and her face said it all. Yes, his speech was delayed. But not delayed enough for services.
Same old story for us. Just like our evaluation in May, and just like almost all of Howie’s evaluations, we’re smack dab in the middle of the “gray area”.
I could tell the therapist felt terrible. She told me that she knows he needs help and would really benefit from services. She’s worried about the gap between his expressive and receptive language, and is concerned that he’ll start to get frustrated and we’ll see behavioral problems creep out. She could pick him up under “clinical judgment” for six months, but just like she told me last time, she’s worried that we’d lose time when he really needed it – the 2 1/2 yrs old to 3 years old time frame, where the speech demands are so much higher. She recommended waiting again until January, doing another eval, and then she could pick him up from February to August, right before he starts preschool.
In addition, she gave me some new tips for getting Lewis to start talking. She told me to “sabotage” his day a bit when it was just the two of us home, keeping things from him until he attempts the word. I should concentrate on getting Lewis to say the last sound of the word, because he would use the same “b” sound for “bus” and “ball”. She recommended that I focus on just saying one word, not a two word combination. At that point, I had been trying to get him to say “more juice”, but in her opinion getting him to say just “juice” was the most important part.
(on a side soapbox note, the therapist also told me that if we had qualified, the fees would have been significantly higher than we had paid in the past. Because of budget cuts, the department of public health was forced to either raise fees or increase eligibility requirements even more – by a 50% delay. That meant that two year old would have to be speaking at a one year old level in order to qualify for help, thereby missing a whole group of kiddos who need help. Of course, we all know that it means that when those kids get to school, their delays would have been SO significant that the department of education would have been footing the bill…same pot of money, just different department. Just dumb. ok, off the soapbox)
So, long story even longer…
This past week we’ve been trying really hard to implement her suggestions. I wouldn’t let him down from his high chair until he said “done” instead of “da”. If he wanted a banana, he had to say it and not “na na”. And if he wanted out of his crib, he had to tell me “hi, Mama”.
It’s working. He says “done” – the whole word – when he’s finished eating. He’s saying “ba nana” (with the space). And while he’s still not calling for me with “mama”, he will repeat “hi mama” perfectly when I say it first.
Great, right? So why do I feel so guilty?
In one week of intensive work on my part, we’re getting somewhere. It’s not like he caught up in a week, or will even catch up in a month, but we made progress. Because I was giving him my attention. You know, what a mother should do. A mother who is able to focus on her kid. A mother who isn’t completely exhausted with…everything else. I know it’s pointless to play the “what if” game, but in this case I can’t help it.
Now it’s time for us both to play catch up.
“I may know the word
But not say it
I may love the fruit
But not taste it
I may know the way
To comfort & to soothe
A worried face
But fold my hands
Indifferent” – I May Know The Word by Natalie Merchant