Sunday, February 28, 2010

Where are the Well-Behaved Children?

This past week, I received an e-mail from the mom of one of Tgirl's classmates asking me for some advice regarding one of her children - a middle-schooler. I don't have a middle-schooler. And I don't have well-behaved children. But she thought I would have some advice or insight into her situation

I did give her some things that we do, what we try to have work for us, books we read, etc. But I also let her know one key fact - that every family has issues. I have been learning that myself lately. Because most of the time I imagine other siblings embracing their special brother or sister (or their typical sibling for that matter) and life is just rosy all the time. It is easy to sit inside your family bubble (and if you have a special needs child, that bubble can be very small and confining at times) and think that everyone else has it so together, isn't struggling, has perfect children while you struggle to make it through the day, get your kids to school without them killing each other or whatever. Guess what - *everyone* has something going on in their family - it's just that nobody talks about it. Even if things are fine this week, there was a time last week when chaos ruled. I've learned that talking to 'typical' families, and I've learned that talking to Holland families. Although in the latter case, the issues do seem more acute. What drives the issues with the other sibling in a family like mine? I believe it is a mix of personality inherent to the child and the stress-filled dynamic that the special one brings. There is no getting around that second point. That dynamic makes it mark on every single member of the family every single day. The baseline level of life stress is just higher. The joy is much sweeter, though, which is evidence of God's grace for us because otherwise we might never make it.

The day I wrote back to the mom, it was generally going well in our bubble. Tgirl hadn't been sleeping well, but she was holding it together. Tboy's attitude had taken a couple of days off and the prior afternoon he had slowly, but confidently, worked his way through his math homework, which is a constant struggle for him. No sooner had I written back to the mom then I had to go pick Tgirl up from school *2.5 hours early* because her behavior was so bad and disruptive her teacher thought it would be better if she left for the day. And what was going on at our house at 5:30pm that same day? Tboy, who had started on his homework at 3:30, was *still* in his room crying and having a tantrum over it. Then he had a tantrum because he didn't get the toy he wanted, which I had been holding back until he did his homework without crying.

I was never going to admit that this type of stuff goes on in our house, but it does and it is a fact of life, and this is supposed to be about the good and the bad of our lives with Tgirl. But I will add this post-script. Tboy had his meltdown on a Thursday, which means the next day was Friday - a day with no homework if you are a second-grader. He came home from school and asked to do extra homework so that he could prove he could do it without crying and earn his toy. I gave him a small writing assignment. Which he did, beautifully, carefully, and coherently. Turtwig - meet Tboy.

Thursday, February 25, 2010

Penguin Pants, Penguin Pants

[Ed. Note: Sorry for the delayed silence. Life happens, you know?]

One of my hidden talents is that I can make up a song about anything. One day in January, while taking Tboy to school, we were singing made-up school-day songs to the tune of Jingle Bells. Perfectly fine, until we got out of the car, and I was singing "Get out now, get out now, get out of the car..." a little too loudly, and only about 5 other people were standing around.


We have a pajama pants song that we sing. But we only sing it if Tgirl is wearing her ice cream cont pants or Tboy is wearing his penguin pants. When they wear them on the same night, well, we sing the song about 100 times. Tboy wore his penguin pants last night.


He had no idea why I wanted to take this picture, hence the look on his face. 
Penguin Pants, Penguin Pants!
Tboy has his Penguin Pants!
Penguin Dance, Penguin Dance!
Tboy do the Penguin Dance! 
Look out!!!! 
Here come the Penguin Pants!
penguin pants, penguin pants....
repeat forever



I think I made up the tune, so I can't really give you an idea of it. But if you know me in real life, you can ask, and maybe (maybe!) I will sing it for you.

Tgirl didn't have on her ice cream pants, but if there are pictures being taken, she always wants to be a part of it. So, here she is.

Thursday, February 4, 2010

Does Tgirl?

Does Tgirl walk on a curb for 10 steps without falling off? Never
Does Tgirl pour from a container? Never
Does Tgirl pull on a shirt? Never
Does Tgirl button buttons? No
Does Tgirl know big, little, more, less? No
Does Tgirl spell her name? Never
Does Tgirl use scissors to cut a straight line? Never
Does Tgirl color in the lines? Draw simple shapes? Write her name? No, no, no.
Does Tgirl join and zip a zipper? No
Does Tgirl hang up her clothes? No
Does Tgirl pull up her own pants? Sometimes, but she cannot get them on her legs.
Does Tgirl carry a plate to the counter? Rarely, she would just drop it.
Does Tgirl attend to tasks? No
Does Tgirl follow 2-step directions? Rarely

I sat through an interview with the school psychologist and answered questions about Tgirl. There were some of positive answers (sure she can sit and hold her head up), but knowing you are answering "Never" over and over again to things that 7 year olds should do, well, it's draining.

I did say the school psychologist was being helpful. And she did score my assessment and give me written evaluations today. And I know numbers don't begin to tell the whole story. But they are a part of her, and we make decisions based on them.

But the results have been going through my head all day. Swirling swirling swirling. Clouding all of the other tasks I had to get done this afternoon. Let's just say I am glad Tboy didn't have any homework, because I would have never had any patience to deal with it.

So, Tgirl is a series of numbers. What are they? IQ 53 (which is higher than the last time she was tested, so I'll take it). Adaptive behavior age equivalent 2 years, 4 months. When she was three, she had an age equivalent of 18 months. Almost 5 years, and we have gained 10 months. I wonder what the next 5 years will bring.

Paperwork, Paperwork

Chances are good that we are getting Tgirl a supports waiver slot. Yay! But oh the paperwork! And, apparently they are changing the laws and funding right now which means, well, I am not sure what it means for us, but it sure has other parents in an uproar.

The process is making my head spin. Here it is:

First, get Tgirl a full cognitive and adaptive evaluation. (This was actually in progress for various other reasons and the school psychologist was very nice and put a rush on it for us, which means it is coming home today all done!)

Then, once we have the Psychological Evaluation in hand, share it with someone at HHS.

She, in turn, shares with Tgirl's Medicaid Specialist (don't you wish you had one of these?). We get a referral to the Targeted Case Management agency of your choice (oops! I forgot I was supposed to be looking for one of these and now I think I am really behind the 8 ball.)

Now, for the State to determine Tgirl's eligibility for CAP-MR/DD, they will need the Psychological Evaluation, a statement from the Medicaid Specialist that Tgirl's Medicaid application is in process, and an MR-2 form completed by an MD (not a physician's assistant or a nurse practitioner - this is a shame because Tgirl's main provider is a PNP but we do have MDs also).  We can't take the MR-2 to the doctor until we have the Medicaid number to put on it.

Once the MD signs the MR-2, it's only good for 30 calendar days.  The State has 5 business days to approve it (15 if it's problematic - whatever that means).  Once the State grants Prior Approval to the MR-2, the Case Manager (that we haven't found yet!) only has 30 calendar days to submit the Initial Person-Centered Plan to Value Options for review.  Value Options has 15 business days for review (15 more if the plan is problematic). Except here is where I think the laws are changing even as I type!

On top of this, the Medicaid Specialist has completely different time-lines for Medicaid.

Got it? Good, and please can you explain it to me. Because I am also supposed to be rescheduling one and planning for two PTA meetings, planning a Family Night Out for Tboy's school, dealing with Band start up for his school, getting camp physicals and forms completed so that Tgirl (and Tboy, but Tgirl especially) has something to do this summer so she doesn't go crazy, getting Tgirl's handicapped parking tag so we can have less space to lose her when we take her out, figuring out what else I am forgetting, and on and on and on.

Monday, February 1, 2010


Well, we got some snow here in NC. Saturday it was kind of miserable going outside - snowy, sleety, gray and wet. But the hubster took the kiddos out for a little while. Poor Tboy - his wrists were bright red when he came inside.  Tgirl had some home sick from school Friday, but her temp was normal the next morning, so we sent her outside as well. (NB - I stayed inside where it was warm and dry!). Of course, that night she was miserable and sick again!

Tgril was a little tentative, but Tboy got right down to business making snow angels.

Unfortunately, Sunday both kids and I were sick. So, no going outside for anyone. Monday brought a day off from school and a sunny afternoon, perfect for playing outside.

First, Tboy and I went out, and just messed around. Then Tgirl came out. My world! It seemed like she said. Of course, she did spend all last week learning about snow in school.


She even made a snow angel. Can you see that smile!?!

We don't really have a hill to sled down, but it didn't matter. As it turns out, our front steps are snowed perfectly to make a nice little hill. Tboy discovered it first. And scaled it like a little mountain climber.

Then, the fun part! So, it's not the longest ride, it's the thrill that counts!

Once Tgirl came out, she was having so much fun, we had to try to get her to slide down the steps. There are no pictures of me hoisting her up there (since I was the official photographer and playmate), but Tboy was at his most gracious. He sat at the top, held out his hand, and said "Here Tgirl, take my hand!".

Then he worked to get her settled....Scoot down a step, Tgirl, scoot down a step!

While having fun, she wasn't quite sure what to do. Tboy to the rescue - Watch me!!!

Then, finally, down she went.

We all clapped and clapped - Good Job Tgirl!!!!

So, it had snowed first, and then sleeted, putting a nice crust on the snow. When you walk on it, it breaks apart. Perfect for an almost-8-year-old boy who is fascinated by scaaarrrry graveyards. Guess what the snow pieces made? A snow graveyard of course. Here's how to make one.
Choose gravestones carefully, and carry them over to the graveyard.

Place them just so....


Be careful not to break any (like this one!) A slightly dejected Tboy tries not to cry over a broken gravestone.

All done!

Another (admittedly close to home) outing, another happy day. With only a few episodes to Tgirl-zilla stomping on gravestones, we had a very very nice time outside, Tboy got to play helpful big brother and hopefully, I have two tired children who will sleep well tonight!