Tuesday, February 28, 2012

Amazing Audrey

I frequently post on here about JT, his issues, his newest milestones... but today it's all about Audrey.

Audrey is awesome. She is seriously the most kind, caring, sweet, smart kid in the history of kids.

She is also mature way beyond her years, mostly thanks to autism.

See, Audrey's life isn't easy.

We make plans, then abandon them last minute because JT can't do it (when the outcome is go-and-have-a-full-blown-public-meltdown vs just-go-home, the latter wins). She gets disappointed by this a lot.

When playing with JT, she rarely gets to choose the game. In fact, she has to beg and do whatever he wants just to get him to play along at all.

She has dealt with kids telling her her brother is 'weird'. She told them, "He is an awesome brother. He is smart, and kind, and funny. He can't help he's different." (That makes me tear up every.time.). I told her she could tell them he has autism. She said, "I don't want to. He's just a kid who's different."

Sometimes I feel guilty that her life is unfair, ruled by the almighty whim of autism at any given moment (like the rest of us), but she rarely complains beyond a few minutes. I wonder how many children would handle everything she handles with such tolerance and compassion.

She believes her brother is capable of anything. She used to say, "Mommy, JT can live with me when he grows up, I'll rock him to sleep" - all those nights we just couldn't get him settled down. Now she wants to live next door to him when they're married.

I live in awe of my Audrey. I used to joke that maybe 'Audrey' wasn't the best name choice for her - she's not the most coordinated (her face got more play time than her feet in soccer :) ). But it is a perfect fit. She handles everything in life with such amazing Audrey.

It's funny, I always thought parents knew everything. But I feel like I learn something new every day.

I am so thankful to live with such an inspiring human being - Audrey is just incredible.

So, while I may not post as much about my baby girl, she is truly my heart. She is awesome, beautiful and the best daughter/big sister in the world.

Sunday, February 26, 2012

Happy Update

Yesterday, I put in my 2 weeks' notice at Starbucks.

As wonderful as Starbucks has been, and as fun as my coworkers are, it just isn't a good fit for me.

I had been in contact with a family who was looking for an autism therapist (ABA) for their little guy, and today had my 'interview'.

First, the family is awesome. LOVE them. Second, the kid is ADORABLE. And so sweet! Third...

I GOT THE JOB!!!

Super excited!

It's very part-time, but I am thrilled. This is what I want to do.

I am super excited, and cannot wait to start my new job :)

Friday, February 24, 2012

Happy news!

So, I survived the MRI.

After taking the sedative, I showed up at the hospital and The Hubs and I were escorted back to the radiology area.

Then they say that 'accompanying adults are only allowed in when the patient is a child.'

I told them that I had been told that he could come back with me to help me get through it.

The tech repeated their 'child only' policy, and we left The Hubs in the waiting area.

Back in the room, they got me on the table. They strapped me down, and before they could even move the table into position, I started shaking uncontrollably again. One of the techs told the other one to 'go get the husband'.

My awesome husband spent an hour and 15 minutes with his arm all the way up to the shoulder stretched into the MRI machine so he could hold my hand during the whole procedure.

It was the ONLY thing that made me okay. Truly, I could not have done it without him holding my hand.

So, I did make the entire test.

Results came back same day.

They're lymph nodes.

Not sure what is going on, but they are definitely benign.

My options are to watch and wait, or see a surgeon that specializes in lymph nodes.

I'm opting for the waiting.

So, AWESOME news on that front...

Other exciting things are happening, too... I will post about them as soon as I can reveal them :)

Happy news!

So, I survived the MRI.

After taking the sedative, I showed up at the hospital and The Hubs and I were escorted back to the radiology area.

Then they say that 'accompanying adults are only allowed in when the patient is a child.'

I told them that I had been told that he could come back with me to help me get through it.

The tech repeated their 'child only' policy, and we left The Hubs in the waiting area.

Back in the room, they got me on the table. They strapped me down, and before they could even move the table into position, I started shaking uncontrollably again. One of the techs told the other one to 'go get the husband'.

My awesome husband spent an hour and 15 minutes with his arm all the way up to the shoulder stretched into the MRI machine so he could hold my hand during the whole procedure.

It was the ONLY thing that made me okay. Truly, I could not have done it without him holding my hand.

So, I did make the entire test.

Results came back same day.

They're lymph nodes.

Not sure what is going on, but they are definitely benign.

My options are to watch and wait, or see a surgeon that specializes in lymph nodes.

I'm opting for the waiting.

Monday, February 20, 2012

A blip and a moment.

JT's issue at school is emerging as a pattern... we have our first blip (aka regression, but I hate that word).

We've seen it ramping up for a few weeks now, just the generalized anxiety, the arguing... the meltdowns coming once every day or two - that is really out of character for him.

Then he started the stimming. Not that he doesn't stim usually, but this was different. He was orbiting our living room, around the couches, in a giant circle, running. Constantly. While scripting. You could catch random phrases from entire conversations - such as "There you are, Perry!" (Phineas and Ferb), "Swiper no swiping!" (Dora) and other random show tidbits. He would stop at our curio cabinet briefly to stare at himself. While orbiting, he would shake his head back and forth quickly...

Just random stuff I haven't seen in years.

And it scares me.

He's not here with me when he's orbiting like that. Physically, I can see him, but mentally, he's in autism-world, not here. And I don't want him to slide that way - I don't want to lose him to that world. I like him here in my world with me.

We're working on it. We're watching it, figuring out the WHY so we can help him. I think I've finally nailed it down, just have to get a plan together. Plans are good :)

Not to jinx it, but today was a MUCH, MUCH better day. Very little orbiting. More playing with me. Even a few new things.

Like when he agreed to go to bed with his sister tonight, parking himself on the bottom bunk, only because she was clearly set on getting him in there and would be upset if he said no. Then, after she fell asleep, he came to get us to tell us he wanted to go back to his bed. He followed me in to grab his blanket, and as I pulled it off the bed, he stepped up on the lower mattress and gently kissed her forehead. He stepped down, smiled and said, "Shhh, sissy sleeping. Don't wake her up."

I cling to the good things in today, and pray for more tomorrow.

Friday, February 17, 2012

Dear God, the Universe, and whoever else can help.

I'm not sure if you can see it from up there, but that white spot? That's me waving my white flag.

I give.

Uncle.

Whatever the frick it takes for you to back off just a little.

So I'm going through all this crap with my masses (there are actually 4, 2 in each armpit/boob) and my MRI phobia. I'm supposed to take my sedative and go back with a driver (a.k.a. The Hubs) Thursday morning. PRAY THIS WORKS. The ones on the right hurt pretty bad.

Then yesterday Audrey has a total freakout, ends up telling me that a little girl in her class has been pushing her (literally, physically pushing her) and saying awful things to her, and awful things about her to other kids when she's in earshot. Audrey had been doubled over in pain (her stomach) all week, but was afraid to tell us in fear the little girl 'would get meaner'. Of course I contacted her teacher, who assured me she would figure it out. The teacher handled it beautifully, the girl is being very kind to Audrey, sincerely apologized and told her it wasn't her fault. All day though, I spent stressed out hoping that it would turn out okay.

Then JT... Oh my JT. He is having issues with getting in trouble. As in, if he gets reprimanded (in our house, we use our 'scolding' tone, we don't yell, and we never spank) he completely loses control and has a meltdown. We're talking meltdowns that we haven't seen in 3 years. Out of control, lost in autism-space meltdowns. He doesn't see us, hear us or respond. He is screaming, angry, thrashing and gone.

Today the teacher had to raise her voice at JT. See, he's a good kid. It's the first time she's ever had to raise her voice at him. But it happened... and he was standing behind another kid. So he freaked out, upset the kid in front of him... that kid bit JT. Then JT went and started kicking a table, then TRIED TO FLIP THE TABLE OVER. Then he went and smacked (thankfully, not hard) another kid (not the one that bit him). DISASTER.

We are trying to come up with stuff to help him with this, because obviously he's going to get in trouble occasionally, even though he's a good kid. Social stories. Visual schedules and first/then cards (issues only happen after lunch). 'Practicing' when he gets in trouble at home with appropriate responses.

Ohmyfreakinggosh. Seriously, God. Universe. Cosmic Energy.

BACK OFF.

Sunday, February 5, 2012

MRI's and claustrophobia.



Oh geez.

Since I can't start my story with today, I'll start it with Monday.

I've been having pain in my axilla (aka my armpit... aka Bob's home 2.5 years ago). I told my doctor about it, said I wasn't sure if it was scar tissue irritating the nerve or new Bob tumors (he was resected, so there are lots of little Bob's that the hope was they would lose their blood flow and die, not regrow). Anyway, the doctor suggested an ultrasound.

Wednesday had the ultrasound.

I saw on the screen, the oval thing she was measuring.

Only I found out later, they were oval thingS. 2. They're about 1x2cm each. They are lesions (masses). Not cool.

My doctor wants an MRI. Of course I agree.

A referral snafu ties it up for 2 days, and they get me into the MRI machine at the hospital on Sunday (today).

Only it didn't get done.

I've had MRI's before. Even an MRI of my axilla!

But today I FREAKED OUT. I had the worst panic attack I have ever experienced. I was shaking so hard my arms were banging the machine. I seriously lasted only about 10 seconds in the MRI machine before they had to pull me out (or I would have been clawing my way out). Apparently I am severely claustrophobic.

They told me I needed to contact my doctor about sedation and then, once that's set up, to reschedule. I'm trying to figure out how much they would have to sedate me to get me in that machine for 30 minutes or more. It's a full chest MRI with and without contrast.

Anyway, a bunch of updates in one. I have plenty more about other life stuff, but this seems to be taking priority right now.

Ugh.