I didn't know it, but I guess I needed a little break from blogging. Hence the lack of posts around here lately. I had the time on a few occasions around here to write a post, but I found myself doing anything but. So, I decided to come back when the time felt right, and I felt like I had something to say.
Buzzy has been doing a lot better in terms of his articulation and general understandability. (Is that even a word?) Whereas before he would call a banana "na-na" it's now a "ba-na-na". It doens't flow together like an NT child would say it, but it has 3 distrinct syllables, which is good. Also, we call pacifiers around her "buzzifiers". He would call them "fiers". Now he says "buzz-fier" which is also an improvement. "Gro mama" has become (with some reminding) "gro-sssss mama". That last one is one of his catch-phrases. Lots of things around here are gross.
Just a little update on where we are with all the irons I have in the fire...
-Service dog - we will hopefully hear something in between June and December. I am really hoping and praying they will have a match for him. So, that's where that is, and where it will be for the foreseeable future. This is from the place locally. On hold is the place where we would have to fundraise. I am not doing anything with that right now. And hopefully won't have to ever.
-Allergy testing - we received the test kit last week and I just had his blood drawn for that on Monday. We should have results in 2-3 weeks. I wrote on the calendar when we should start getting our undies in a twist about that.
-Pyroluria testing - A friend told me about this issue. The body doesn't remove some metabolic byproducts properly. It can be tested with a simple (ha ha, is anything simple?) urine test. I ordered the test kits for everyone in my family (except my husband) on Tuesday or Wednesday. I definitely meet a lot of the criteria for this particular issue. It is easy to fix with vitamin supplements If Buzzy is positive, I will definitely go over the results with his doctor.
-Baby sister - she is now a year old and is showing a lot of similar delays to her brother, but fortunately not as severe. We will be adding her as a patient to Dr. Usman. I am going to try to get them both in at the same time to avoid multiple 2 hour drives up there. I am heartbroken about this. When I think of my beautiful baby girl having the same problems as Buzzy it's almost unbearable. And how I am I going to give her shots if she needs them? And watch her get her blood drawn? It just sucks. There are no other words for it.
-Urine testing - I am going to try to combine this with the pyroluria testing. For both of them he needs to be off any supplements for a period of time, so I hoping to kill 2 birds with one stone.
-Dr. Goldberg - this is the doctor in California. We have not heard anything back from him. I filled out a bunch of records requests and hope they have made their way to him and we get an appointment scheduled. I am still interested in his opinion, but I am wondering if Dr. Usman can't pretty much do the same thing he does (minus the neuroSPECT). So, given some time, I am less enthusiastic.
-Geneticist - We have an appointment for March 29th. We were originally scheduled for the 22nd, but that had to be changed. Grrr. I still have to fill out release forms and fill out the regular registration forms. I am wondering if they will test me for MTHFR, because I really want to know where the bad copy of the gene came from.
-More therapy: Skill Sprout is very close to being able to provide speech therapy for Buzzy (they do his ABA already). All I need to do is get a hold of my service coordinator and make it happen. Sounds easy, right? Bwhahaha! They will be able to see him twice a week (Mondays and Tuesdays) and back-to-back with his ABA. As long as I can get EI to sign off. See below.
-Did I mention getting a hold of my service coordinator? And how I can't ever seen to be able to? Yeah. She never returns my phone calls any longer. When I last saw her in October, she told me to look out for the transition meeting "at the end of January". I called her mid-January to ask about it. And again at the end of January. And then I pulled out the big guns and had my husband call her. Amazingly (since he called her from work - he's a principal) she answered. Turns out the transition meeting was the following day and she was sure I knew about it. WHAT???!!! Anyhow, I managed to show up and got Buzzy's evaluation for special education services reserved, but just barely. She wouldn't even look at me, and didn't acknowledge my presence. Guilty conscience, I suppose. The thought I may have to deal with more EI crap for the baby makes my butt itch. Ugh. But, the good news is, at least for Buzzy, we will now deal with the special education association for our county. And they seem to return phone calls. Yay.
-Someone I go to church with works as a PT for kids. I have an evaluation set up with them for additional speech services. I called them when I was waiting for Skill Sprout to make things happen. I will take Buzzy to the eval and maybe we can get speech through them, too. Maybe insurance will even pay for it. I don't know. All I know is that I want to keep my options open. And avoid EI as much as possible.
Whew. I think that's all I have on the medical/therapy front.
I want to talk a little about ABA. I meant to stick around last week and watch part of a session, but I can't now remember how I talked myself out of it. So, I am still largely clueless about how the sessions are conducted. However, after every session I receive an email that talks about the skills worked on and the results. I know he is given a task, and he does 10 trials of it. Each trial is recorded as a (+) or a (-). The + is given if he successfully completes the task. If he gets (out of 10 trials) 80% completion, then that's good. But, he has to have an 80% (or higher) success rate, 3 times before a task is considered mastered. And once a task is "mastered" they periodically do it again with him as "maintenance" to make sure the skill is retained.
Here is a recent report:
Responding to nonverbal communication: Get item therapist points to on floor (further away) field of 1 100% Mastered. Way to go!
Same/Different: Give different picture 80% Keep up the good work!
Letters Expressive: O Expressive: P BL 100% BL 100% Awesome!
Letters Maintenance 100% Great work!
Yes/No questions: Do you want this? Yes with object not present 40% Keep working.
Joint Attention: Faces Various face changes 0 n/a
Mands for missing items and actions: I need ____. Cup/Milk 60% Keep trying hard.
Mands for missing items and actions: Maintenance 100% n/a
Greetings Waving bye, further proximity 60% Doing better.
Listener responding maintenance 100% n/a
Listener responding: What eat and drink BL 90% Great job!
Colors Receptive in messy array (red) 100% Awesome!
Direct instruction emotion Expressive happy BL 60% First time having to expressively identify.
Direct Instruction emotion Maintenance 90% n/a
Shapes Expressive: Rectangle BL 100% Diamond BL 100% n/a
Learning to talk: Repeat what therapist says (meow, moo) 90% Mastered! Way to go!
Gross Motor Imitation: Put arms out to side 60% Keep working!
Fine Motor imitation: Making right fist 70% Keep trying hard.
Beginning parallel play: Rolling ball 90% Amazing rolling back and forth today!
Joint attention duration: Listen to story for 1 minute intervals 80% Good listening and turning pages.
Respond to name: Eye contact in unstructured setting on floor 60% Keep looking when name is called. Sitting at table 2 minute intervals at end of session 100% Amazing sitting at the end!
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So, those are some of the skills he is working on in ABA. When I look at his progress, I am proud of how hard he is working. All of these are things that come so naturally to children his age, without intensive instruction Which then makes me feel sad and angry all at the same time. He is going to have to work hard to be able to do some of the simplest things. But, then I think about how easily he's learned his letters and numbers and he can count so well, and I don't feel quite so depressed. It's still a long, hard road for him. But, he is happy and making progress, so I will take what I can get.
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