Because I made Manny's appointment at 11:30, I let Cindy know, upon arrival, that I would need to leave right at or a few minutes before 12:30, so I could be sure to be home when Jake got off of the bus. She threw some paperwork at me, and I worked on that while she filled out an assessment, asked questions, watched Manny, and we talked. Pretty soon she said "I will cut to the chase, I know you well and feel like we can just jump in here."
(Lay it on me, I'm more than ready.)
According to Cindy's assessment, Manny's motor and adaptive skills are quite delayed, but she feels that at least he is showing improvement. However, his Social, Communication/Speech and Cognitive skills are next to non-existent. Not a surprise, but as always, hard to hear.
(Great, fine, OK. What do we do? Give me a plan, give me hope, we have 20 more minutes, you can do it.)
Cindy says that we need to gang up on Manny from every side, with intense therapy. She has offered, because of my schedule and hers, to come in on what is usually her day off, Friday, and see Manny at 9:30 in the morning every week. She also suggested that I ask Babies Can't wait if we can get a special instructor 2 days per week, but at least one day, and that instructor can either come to the house, or go to his preschool. Either way, she would like for her or someone to instruct his preschool teachers with some activities that will engage him, at least for a little while during the day. Also, since Steve's parents spend many hours with him every week, she would like to see them bring him to therapy sessions at least a little so that they can also learn specific activities that will engage him.
(Ok! Awesome! We have a plan, with a whole 5 minutes left! What activities.. I'll start today!)
Well, it was only an hour, and an assessment. Cindy doesn't know what to do with him either.. yet. What does Manny like? I don't know... chewing on things? Laying on the floor? Riding in the carrier? She says we may even need to build on some of those things.. but we're going to figure it out. She said we would. I came home and sent some photos for printing for a picture board for his favorite foods. I actually feel like I have someone on my team who WILL figure it out.
Cindy asked me an interesting question when we were having the discussion about finding things he was interested in. "What is the main difference you see between Manny and Jake at this point?"
Oh gosh, well.. Jake was.. for one thing, talking. At 2 and a half he was ONLY labeling, but had a vocabulary of a zillion words. He LOVED to label. He was good at drawing, he suddenly got interested in sign language, and that was a whole NEW way to label. It wasn't rocket science, I just took the things that he was good at, the things he was interested in and I built upon that. So.. lets learn sign language for emotions, lets label emotions, and actions, and abstract ideas!
Manny doesn't have these interests, or skills. He's not "good at" anything. I have no idea where to start. I'm twice as terrified for him, and only half as hopeful, at least on my own. Jake, his Dad and I did a decent job on our own, but Jake showed us the way. We need a little more guidance when it comes to Manny, and a LOT more help from our support team.
And we have it! When I got home I called Steve's mother to ask her if she could help me with the kids tomorrow afternoon. I didn't even get a hello out before I was asked "How did the appointment go!?" I keep forgetting that she also had a special needs child who required a lot of help and extra attention, and doesn't resist talking about the "uncomfortable" subject of her grandkids. She listened to what I had to say and asked if Manny was going on Friday. Oh Jeez.. no.. I have 8 dogs lined up for Friday.. there's no way, I don't even know if I could even get in TOUCH with all of those people in time, besides, that's my only day this week to make money. "Well, don't turn her down! I'll take him to Cindy if he can get an appointment, and then take him home with me so you can do the dogs. I'm taking Pops too, he's going to go to some sessions with Cindy too, because Manny likes him, and listens to him."
(Really? Am I dreaming? I can have an iota of balance in my life, AND Manny will get the help he needs? Its not going to rest on JUST Steve and me? "Grateful" doesn't begin to describe how I feel towards them at this point. They just WANT to help?!)
Later I returned a call from Ellen, the Service Coordinator at Babies can't wait. I was aware that she was rushed and on her way to a meeting with someone else. She ran down what the the team decided. Susan, the OT, said that it was not possible for her to make up the lost OT appointments, since she is only willing to travel to the Dalton area twice per month, so Ellen and Susan will meet at my house, a week from today, to "talk about what will happen." I didn't really have a chance to respond. Ellen made it clear that, since it is a state program, certain steps must be taken in order to make a new plan, and all of that takes TIME. Manny has been in the BCW program for 5 months and in 7 months he will be 3 years old and will no longer be eligible, as the school system will take over. I want to call Ellen tomorrow and ask if we can skip the time-consuming meeting with Susan, drop OT with her, and ask for a "special instructor" to help with Manny, like Cindy suggested. I really hope that that will make things easier for BCW, I really do, so that they can send Susan to someone else who might need her more, and so that I can both keep Cindy, and get as much intensive therapy and help as we can for the 7 months we have remaining with Manny in that particular program. I just want to maximize Manny's exposure to HELP, combine the resources that WE can (sort of) afford with what the state has to offer, but I can only hold out so long for BCW. How irionic.. "I can only wait so long for Babies Can't Wait."
As if this post isn't long enough, I am going to brag about my first-born for a moment.
I laugh when the teachers send home a note marveling at his ability to read, write, spell, etc. In that aspect, yes, he is a genius! But the same phenomenon can be seen in Steve and I as we saw (and despaired at) in his early therapists. We are simply non-plussed by his abilities to read and write (well not really, we love being the parents of a genius), however we marvel at notes like these from his teacher:
"He sat during circle time and participated very well."
"He is following directions and cleaning up when asked."
"He was interacting with another child this morning and playing a tickle game. His participation during circle time is increasing. "
"During small group time Jake was doing pretend play with a horse and carriage. Very appropriate play!"
Today I took this video, and my friend, who I've never met in real life, but who has been insanely influential in our path as parents of these special kids, typed a message to me "So you say the boy is autisic huh?? From that video you'd NEVER know." Some people might say that and I wouldn't like it, but since she's worked with special needs kids (and from what I can gather, is really REALLY good at it, considering she's been able to cyber-coach me through some very hard times) I see it as the highest praise for my little boy. Thanks Carrie, you mean a lot to us.
Look at that referencing, the anticipation, the shared experience... Thats my boy!
