Sunday, September 28, 2008
Saturday, September 27, 2008
Papa is going to ride his bike a long time. Then he's going to hug me. After he's not stinky anymore.
Yesterday was my Nanny's birthday! She's older than me, I think she's 5. HAPPY BIRTHDAY NANNY! I wish I could come to your birthday party.
I have to go pick out my lunch. Mommy said I can't have chocolate or ice cream. That's what I really want.
Love you lots!
Wednesday, September 24, 2008
First she asked me what Amen was. I explained it's what we say when we get done praying. Then she had me explain what praying was... My answer was talking to God.
"Do you call him on your phone when you talk to him?"
So, I explain that no, you just pray, and God listens. After a few minutes of quiet, Audrey says, "Mommy, I can't hear God talking back. Maybe he needs to talk louder."
From the backseat, we hear Audrey.
"Good job, dad. Good asking questions. But, we don't ask questions naked unless it's to our mommy or daddy."
We cracked up! "Good thing I wasn't naked..." The Hubs replied.
Tuesday, September 23, 2008
I love my daddy lots and lots.
Me and mommy are going to clean the house to surprise daddy (shhh! don't tell... it's a secret!!). He will be so proud of us. I cleaned my own room today all by myself!
I hope that daddy is home soon.
He said three nights, and last night I counted one. Tonight I count two. Only one more.
Monday, September 22, 2008
We spent 5 days (2 of them driving - it's 13 hours!) away, and even though we had tons of fun, we were ready to get back to our own beds.
I finally got to meet The Hubs's mom's family. They were all SO sweet. We did some really cool things, like going to the Aquarium in Camden, New Jersey, and to the beach about 20 minutes from Ocean City. It was really fun, the weather was gorgeous, and we enjoyed spending time with everyone. We wished we could have stayed longer (and shipped our beds in).
Here are some pics from our trip:
Me and Audrey at the Aquarium
The kids and me... The background is Philadelphia, right across from Camden, New Jersey (where we went to the Aquarium)
The Hubs and JT at the Beach
Possibly my favorite picture ever... Audrey teaching JT how to drink from a water fountain (he did it!!!)
We returned to our house to discover our air conditioning is not working, which really sucks! The internet was down, too, but luckily I got that fixed... Can't survive without that.
I got a sort of 'promotion' with Demand Studios, which rocks... I have 2 new kinds of articles I am approved to do, and I can claim more articles at a time.
All good on the home front... Back to the daily grind. JT starts 'school' this week at WAVES. He'll be going every week on Thursday from 9-11am.
Hope everyone is doing fabulous! Love ya!
Sunday, September 14, 2008
Friday, September 12, 2008
Today I went with mommy and JT to the doctor. That wasn't fun. They took some of mommy's blood, and JT was bad for mommy. I was good.
Daddy takes vacation next week. That means he will be with us. We're going to see my Nana Banana and Shelly and Great Nana. I'm excited.
Papa sent me new movies I LOVE. They are Holly Hobbie and the Little Mermaid baby movie.
His ears were fine, as were his throat and mouth and nose. She checked on his tummy (pushing gently on it), and that was fine, too.
So, fortunately, JT isn't sick. Unfortunately, that means this is most likely behavioral.
She said that there is medication, but neither one of us want to go that route unless this becomes a constant battle.
While we were there, JT bit me hard enough to break the skin twice, and was trying to hit Audrey and myself.
He went down for his nap without incident, but about an hour later started another one of his screaming sessions. After screaming for over an hour and a half, he started throwing things, including the trampoline. I didn't want him to hurt Audrey (or myself), so I put him in his room. He continued screaming in there for another ten minutes. When I opened the door to his room, he was laughing and jumping on his bed - like nothing had happened. He came out and played with me fine.
Wednesday, September 10, 2008
And here's a picture of me and daddy watching a movie earlier. I love daddy (but I call him The Hubs sometimes cause it's funny).
A few things he did do: he said 'Open it' after Miss Laura did, and he kept pretending to fall off his chair and saying 'WHOA' - to avoid doing what she wanted him to, but creative at least. He also told her to 'go away' - which was great language, but not such a great message! About half way through, he started screaming hysterically, and it took him about thirty minutes to calm down (right before Miss Laura left).
The afternoon with Miss Amy went pretty well. He repeated a lot of words for her, and played with cars and the tunnel that she brought (he even pretended to catch a fish in it). However, about ten minutes after she left, we had another screaming session, this one lasting a good hour...
He has started saying 'Yi-yi' when he gets tired of doing something, which is his word for 'byebye' or 'nightnight' (they sound the same). He used those a lot his past couple therapy sessions (including last week).
He did eventually calm down, and had a pretty good evening.
This brings the total of 'screaming sessions' up to 3. 2 hours Sunday evening, 30 min yesterday morning, and an hour yesterday afternoon. He is completely inconsolable during these, and manages to scream with such force he gets all splotchy/sweaty/very very hot.
Side note: JT loves bacon. He ate 13 pieces of it for dinner!
Tuesday, September 9, 2008
Monday, September 8, 2008
Sunday, September 7, 2008
He was playing chase with him, peekaboo through the wood structures, and they were babbling back and forth like crazy!
It was awesome!!! The first time he's REALLY taken interest in playing WITH another child.
Saturday, September 6, 2008
He looked at it for a minute... Then looked at me and said... "O". At first I was thinking I missed the 'uh' part of 'uhoh' (he loves to play this game where we say uhoh in all different volumes/tones). But he kept saying "O". Finally I thought... No. He couldn't know that there's the letter "O" there. But when I pointed to it and said "JT, this IS the letter O, you're right!" He immediately said "E". I was like, holy crap. He knows at least 2 freaking letters by sight.
He NEVER says things like this... He babbles, but it's like a jumble. So that's definitely what he's saying. There's really no telling what all he knows.
I guess all those times he's been watching "Learning About Letters" he's been learning for real! It's a Sesame Street video, and Sesame Street taught me how to read... Like mommy, like son!
He looked at it for a minute... Then looked at me and said... "O". At first I was thinking I missed the 'uh' part of 'uhoh' (he loves to play this game where we say uhoh in all different volumes/tones). But he kept saying "O". Finally I thought... No. He couldn't know that there's the letter "O" there. But when I pointed to it and said "JT, this IS the letter O, you're right!" He said "E". I was like, holy crap. He knows at least 2 freaking letters. He NEVER says things like this... He babbles, but it's like a jumble. So that's definitely what he's saying. There's really no telling what all he knows.
I told The Hubs, I guess all those times he's been watching "Learning About Letters" he's been learning for real! It's a Sesame Street video, and Sesame Street taught me how to read... Like mommy, like son!
I am SO proud of that little man... It is just amazing.
Friday, September 5, 2008
First, my 'two moms' are coming next weekend (September 13). They're going to stay here the whole weekend, which is awesome. My mom has been here a few times, but Mimi has yet to come due to all these procedures they're doing to fix her heart (she's getting shocked again this morning, ugh). But, she's finally feeling up to the 6 hour drive, so here they come! Yay!!!
Then, my dad and my other mom (stepmom) are coming the first week of October. My dad is doing the MS150 - the ride I would be doing if my ankle wasn't screwed. They're going to be here for about a week I think... We haven't seen our Papa or Ginny in SO long, and we all (especially Audrey!) miss them bunches.
I am so excited to see everyone... And I love how my kiddos light up around all their grandparents. It's awesome.
As for today, we've got speech therapy, and then we're done for the week (thank goodness). It's been a rough one, but the little man seems to be doing better. The Hubs and Audrey had a 'date' at the library yesterday, and JT and I had some one on one time and did some grocery shopping (and toy shopping, I'm a sucker). He was SO cute last night... I was marching in circles, and he was following me marching, too. Then I was jumping, and he started doing it, too. Maybe all he needed was some mommy time. Last night he let me rock him to sleep (by let I mean demanded, but I love it because he snuggles up so close).
We're rooting for the Razorbacks tomorrow... Woo pig sooie!!! (Side note: we better improve this week, or LA-Monroe is going to beat us, and Texas will eat us alive next week... Perk up hoggies!)
YAY FOR FOOTBALL SEASON!!!!
Audrey was showing The Hubs the book and pointing out her favorite pictures.
The Hubs: What's this one?
Audrey: A leopard?
The Hubs: Wow, really close. It's actually a cheetah. See, the spots are a little different than the leopard.
They continue looking for about 15 minutes, and The Hubs stops at a picture of a leopard.
The Hubs: Oh, Audrey, what's this a picture of?
Audrey: A leopard. It's not a cheeto, it has different spots.
Thursday, September 4, 2008
ABA therapy with Miss Amy
JT started off with very little eye contact today, but after about ten minutes, he warmed up. Miss Amy brought the shake and go race cars and race track, which JT was really interested in. JT did spend a lot of time under the table (like yesterday's OT session), but eventually came out and played in the clear plastic bin (the one the shake and go stuff was brought in). He had excellent eye contact and was really repeating words for Miss Amy. He used the word 'up' and 'whoa' appropriately on his own. He was very snuggly towards the end of therapy with Amy, and he cried when she left.
Mom's daily notes: JT seems to be doing better. He doesn't seem to be as tired and fussy, although he is still a little leery of everyone (Tuesday was very traumatic for him), but he is opening back up. He seems a lot happier and 'loud' - the JT we are used to. I got some time alone with JT today, which seemed to make a world of difference in his 'happy level', so that makes me feel good, too.
Hopefully we'll stay on the upswing!
-Discussed concerns of mom re: autism and behavioral issues, JT has been a little more 'stimmy' lately
-Worked w/JT on guided play, following directions, and using simple signs for play
-JT was more "fussy" than usual today
JT usually LOVES when Mr. Rob comes. He spent most of the time hiding under the small table in the playroom, pulling the chairs in around him. Even when Audrey and Rob were ramping toy trains, he just cried. The only thing I can figure is that he is still tired from the 'sleep deprived' EEG from yesterday, and hasn't quite made up for lost sleep. He just didn't seem that interested in anything today. Hopefully next week he will be in a better mood.
Wednesday, September 3, 2008
Tuesday, September 2, 2008
The neurologist at Vanderbilt Children's said there's no way to know if he is having absence seizures, but he knows that he didn't have one during the EEG.
If we have any more problems/questions, we are supposed to get into contact with them...
He is not a nice guy (in her words). He tangles her hair at night. He messes up the house. He is dirty, doesn't have to wash his hair or comb it, never changes clothes, and is mean.
The Hubs and I are always asking questions about Mr. Nobody. We are very curious about this little dirty jerk living under our roof.
We didn't realize that Audrey had grasped the concept of Mr. Nobody so well...
The Hubs: So, where does Mr. Nobody sleep?
Audrey: He doesn't. He stays up all night, and messes up our house all day.
The Hubs: He does?
Audrey: Yep. He's not very nice.
The Hubs: So... Is Mr. Nobody your friend?
Audrey: No. I don't like Mr. Nobody. I telled you, he's not nice.
The Hubs: Who are Mr. Nobody's friends then?
Audrey: Loser. And loser. His only friends are losers. Mr. Nobody is a loser. And so are his friends.
Nicely put, Audrey!
In the middle of it, Audrey dramatically lays down her pen, and says, "Mom, I gots good news, and I gots bad news."
So, out of respect, I put down my pen, look at her seriously, and say, "Go ahead Audrey, tell me the news."
"Well... The good news is that I had good dreams last night. The bad news? Is I had some bad dreams, too." She is drop dead serious.
There was a brief pause...
"And that's my newses."
It took just about everything I had to keep a straight face...
I'm already mad at Vanderbilt. They screwed up, and last Monday sent us home, telling us our appointment was Friday and we missed it. As it turns out, they had scheduled JT 2 appointments with 2 individual ID numbers, and he had one both days... So we were there for our appointment, and they sent us home. After complaining to all the right people, they got us in a week and a day after our original appointment (I kid you not when I say that the first lady I talked to said I'd 'just have to wait' until the appointment they had gone ahead and scheduled last Monday - OCTOBER 3.).
The EEG was awful. Nurse was great, tech was great... But 90 minutes of electrodes sticking out of JT's head, with gauze wrapped around his head/chin like a mummy, plus a sticky heart rate monitor... Was NOT fun. It wouldn't have been fun for any almost-3 year old... Awful. He screamed, I tried to console, he would get distracted, the cycle would repeat.
When it's finally done, they tell us to go to the computer at reception and check in for our next appointment. I did.
After watching the very busy waiting room clear, not once, but twice! - I asked the lady at the desk if we were doing something wrong. 'Oh, you didn't check out of your EEG. Here, I'll do it for you.' I am a computer programmer, so immediately I'm like, how assanine. How can you check into another appointment and it not check you out of the first one?! You can't be in 2 places at once, so it should automatically do that. Besides that, I had done EXACTLY what the people had told me. Ugh.
After ANOTHER 30 minutes (I stood right by the desk as JT screamed, not that the lady cared, eff her), me making her call and check what the heck was going .. fifteen minutes... We go back into the appointment rooms. Our second appointment was supposed to be at 1015, it was now past 1045am. Anyone who knows me knows how much I hate how doctors treat people like their time is more important than mine. If I'm 15 minutes late, I have to reschedule. If the doctor is 15 minutes late, who cares? ME.
At 11, in comes the doctor. Old man, looks grandpa like. He says 'Did you have an EEG done this morning?' Me 'Yes.' (Steam is probably starting to come out of my ears now... Not happy). Him 'I'm sorry to keep you waiting, I haven't seen those results yet. Let me go look at them.'
Ten minutes later. Doctor comes in.
'Tell me about JT.'
I hate these questions. If they're so damn interested, they could invest some time and read the effing chart, or ask me to fill out paperwork. Not one person has asked me to tell them about JT's blank stares so they can write it down.
'Okay. JT has autism.'
'Who diagnosed him?'
This, my friends, is how doctors always react to this statement. Like parents would make something like this up. Stupid doctors.
'Arkansas Children's Hospital... But, uh, it's REALLY obvious. That was just the formal diagnosis.'
'EEG was normal. Why did you get it done again?' (At this point, I am wondering if he is actually listening to what I am saying, or if I could start practicing my french and he would continue having his one sided conversation.)
So, I explain how my therapists and I have witnessed these strange staring episodes, different from the typical autistic kid staring (which is different than NT kid staring, in case you're wondering). Ugh.
'Well, everyone stares you know.'
'His EEG was perfect (yes, second time he's said it!). We have no way to know if he's actually having absence seizures since we didn't catch one. But we don't want to medicate something we didn't see.'
'I agree. But is there something I should be watching for with these that would indicate they ARE seizures? Any warning signs I should be...'
(He cuts me off) 'Does he even know you're here? Does he interact with you at all?'
JT, by the way, is hiding under an exam table. He is actually playing peekaboo with Audrey, but the idiot wouldn't know that because he's too busy talking to himself. Asshat.
'Yes, he does. He is actually much better than he was a year ago. He's doing very well.'
The doctor looks at me like he feels sorry for me (there's no mistaking pity in someone's face) and says 'I'm sure he does.' Like I'm a delusional woman who imagines her son is perfect and NT (neurotypical). 'Here's my card if you notice anything else.'
And he walks out, after spending a total of 3 minutes with us. He based an opinion of my son's interaction with others based on a situation where my son was in new surroundings, he had been traumatized all morning by a medical procedure, and the guy had never laid eyes on my son before. AND he had just doubted the freaking diagnosis in the first place!!!!
In this 3 minutes, he has managed to give me no useful information about my son's condition. He first questioned my son's diagnosis, then acted like he was the most severely affected child he has ever seen.
I still don't understand the whole doctors thinking parents make up an autism diagnosis. No parent would wish autism on their worst enemy. It is a freaking disability... Ugh.
So, I am severely disappointed in Vanderbilt. Basically, I am happy his EEG was good, but even in the doctor's words, it proves nothing.
This just adds to my depressing week. I have been so excited about my son's progress... But I began looking at his goals and his levels from five months ago. Language and communication wise, nothing has changed. A therapist told me last week she is afraid of my son. He has now injured two therapists (one over a month ago, one last week). Her injury was because of a blow to the head by a thrown sippy cup. She explained she wasn't afraid of his intent... He wasn't trying to hurt her. But he is impossible to predict (like the plate that bruised my face up about a month ago... You just don't see it coming), and I do agree. Plus I adore the therapist, she was just sharing her input on JT, trying to help (and asking for help herself). It was not meant to be hurtful in any way.
But, how do you react when someone tells you they're afraid of your son?
I am just in a funk. I cried all the way home from Vanderbilt (intermittently cursing at the doctor, how dare he feel sorry for me... I do NOT want his pity). I wish I could fix people's ignorance so they could see my son for who he is and what he offers.
Now it's time to take a deep breath and get on with life. Suck it up, momma. Can't let stupid people (even those with medical degrees) get you down.