Yesterday Ellen (service coordinator) and Susan ("former" OT) came to our house for another meeting to determine what services Manny will get from Babies Can't wait and for an evaluation. Ellen said that an evaluation is needed any time that a child shows regression. I opted to decline Susan's services. From what I can tell, she comes to Dalton twice per month, on two days that she determines a day or two in advance, and if that doesn't fit within the parent's schedule, then they must wait another two weeks. She doesn't come any other times. Unfortunately, she's the only OT that the entire area has, and that area is large. I was also offered once-per-week OT in a location a little over one hour away. I also declined that. They were able to offer a special instructor, a special education teacher in our area for over 30 years. I can't remember her first name at the moment. Her schedule is full until March, but after that she will be able to see Manny once per week either at school or here at my house. She is local (just up the road, actually), and it will be suggested to her that, in the event of a cancellation, she try to see Manny twice per week.
I'm sure that Susan is a fine OT, but with her strict schedule and my need for advanced notice, it just wasn't working out. She gave me some ideas to work with Manny. They were great ideas, but seemed optimistic of his developmental level.
Just a few hours after our meeting ended, the special instructor called to let me know that she was excited to see Manny, that she was on board and "I WILL be there." I can only hope that she really means what she says. Meanwhile, Manny will begin to see Cindy next week. Things are "almost" happening. I try to be optimistic.
I went to Manny's preschool Valentine's day party today. I had flashbacks to Jake's Valentine's party, which took place in the same room with Ms. Dixcee. That was my first HUGE wake-up call that Jake was nowhere NEAR the other kids on a developmental level, but I was a first-time mom, and trying to make sense of it. With Manny, I know, and it is inherently more obvious. Manny is so much more behind than Jake was. I'm more prepared, but it doesn't hurt less. The other children are sitting and eating and asking respectfully for more juice or chips, while Manny smears food everywhere, and spits out much of what he puts in his mouth. A substitute aid, a grandmother, was hovering over Manny (even though I was RIGHT there sitting with him) and worried aloud if he would choke on an apple slice (not a stretch at all). Manny can't drink out of a juice box efficiently. He doesn't care about the packages put in front of him as valentines gifts, even though they contain candies and toys. Compared to the other children, he's just not there.. he's an infant who can walk.. at least pretty well.
I asked the teachers point-blank if he is a distraction in class, or just too much trouble. I thanked them profusely for taking care of him, and let them know that I know that he requires extra care, and how much it means to him to be around typical kids. His teacher went on and on about how they'd absolutely LOVE to have the special instructor or OT come to class and give them ideas for things that they can do. We had this discussion openly in front of all of the other parents. They just sat quietly. None of the other parents spoke to me. I don't really blame them. Not only do I look different (what's new?), but I have the different child. It must be as uncomfortable for them as it is for me in those moments.
Jake is doing great at school. His teachers send me his art and writing and I chuckle because I have pages and pages of these at home, and don't even get me started on the doodle pad entries I wish I could save.
Jake has an axillary freckle (cafe au lait spot under his armpit) which is a diagnostic element of NF1. I noticed it around the time Manny was diagnosed. Since then he has only recently developed what looks like a quarter sized cafe-au-lait spot in his underwear area. Again, the placement and development is consistent with NF1. I should probably burn my computer, or at least disable google.
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!
Ellen, Manny's service coordinator with Babies Can't Wait, called on Monday. She said that she was meeting with "the team" Tuesday (yesterday) to discuss Manny's services. I explained my frustrations so far. She said that she is going to discuss my suggestions that A) we get compensation for the OT appointments that have been missed and B) set Manny up with either speech therapy or a special instructor to come weekly. She again stated that we can not do OT with Cindy AND with the state. I have since found out that this is not true and that we are entitled to help from the State regardless of what we are doing privately. She said that she will be calling me today to update me on what they decided, and I plan on bringing this up. I can understand BCW's delimma, and their desire to keep money in the program and give it to people who are more "deserving" of services than we are, however I would prefer that at least one person be honest with me. I simply wish that I wouldn't have wasted Manny's precious time waiting on a program that was supposed to help my son, not simply give lip service to what they are supposed to do.
Manny's first appointment with Cindy is today. I have a giant knot in my stomach in anticipation of this assessment. I trust Cindy and want to think that she can help Manny, but I'm not looking forward to what she has to say abou this development. The appointment is at 11:30, usually near Manny's naptime, but I took what I could get to get my foot in the door. I'm hoping to set up a weekly session with her as early in the morning as possible.
Ok, putting my head down and walking into the wind.....
