This morning

This morning, Maura was a pill.  A feisty, stubborn little snot of a pill.  Yes, even  my little sweetcakes who has a smile for everyone can give me a hard time once in a while.

The morning started off well, or so I thought.  Maura woke up easily, and of course, hopped into my bed.  Granted, her nose was stuffed up to the gills, but otherwise, she was happy and smiling and awake.  My first clue that this was going to be one of those mornings was when she kept sticking her feet into my face when I put her pants on.

*yes, I still dress her.  She still can’t get her shirt on, and some days, I don’t have 15 minutes to watch as she puts pants on.

So, once dressed, we roamed downstairs.  Fixed her beloved Cheese for lunch (aka mac and cheese).  Then I tried to give her some medicine.  And so the games began.

First, I grabbed the elderberry syrup – yeah, I know, hippie stuff, but I swear, it works!  I poured it into the little measured cup that came with it and turned to give it to her.  I was met with a “No!” and her turning her head, lips clamped shut.  After a couple minutes of me trying to get her to drink it, then me trying to get her to hold it and drink it herself without spilling it over her shirt, I handed the cup to her and said “Drink this.”

Maura has taken this before, and liked it.  Maura takes any kind of medication without blinking.  She even sometimes complains when someone else gets medicine and she doesn’t.  So this had nothing to do with taking medication, this was her being stubborn.

So there she stood with this tiny cup.  I said “Drink it up!”  She looked at me, eyed the cup…and then pretended to drink it!  Not once, but like three times.  And while a small part of me was impressed that she’s smart enough to try to trick me, the majority of me was not amused.  I decided to give up on the elderberry syrup, we were running out of time.  I grabbed the stuffy nose medication and the measuring spoon and filled it up.  “Here, take this.”  I said.

Once again, greeted with a “No!” and a face turn and little clamped lips.  “It’s medicine.” I said.  Still a no-go.  I pulled my stern and unamused voice out.  “Open your mouth and take this!”  Maura must have decided she was pushing her luck, as she finally opened her mouth. 

At this point, the clock announced the obvious – Maura wasn’t making it on to the bus.  Great.  Miriam barely made it herself, but I got her out the door and only had to deal with Maura (who thank you God, didn’t scream hysterically when the bus left without her.  Maura loves riding the bus.)

Now, it’s just me and her….if I can find her.  Every time I turned around, Maura had wandered away.  At one point, she went upstairs.  I called to her and she came to the landing upstairs.  I told her to come down, and the girl had the audacity to act as if she was sooooo unstable and afraid to let go of anything to even make it to the first step and put a hand out, reaching towards me with a “Help me!  I’m so afraid and insecure about going down those steep, scary stairs.”  Meanwhile, the mama at the bottom of the stairs didn’t feel like hiking up the stairs to fetch the drama princess.  However, the mama did haul herself up the stairs to grab said drama princess and march her down the stairs. 

And so on, and so forth.

Needless to say, when I got her to school, I warned her aide and wished her luck.  I have a feeling Maura’s going to make her earn that paycheck today!

Jello fail/comprehension win!

Maura came up to me just now with a container of Jello (okay, the whole package.)  I got out an orange jello cup for her and opened it…then realized she was holding a fork in her hand.

Riiiiiiiiight.  We all know a fork and Jello do not work well together.

So I said, “Maura, you need a spoon.  Go get one.”  She looked at me, then left the room.  A minute later, she returned, spoon in hand.  Woohoo!

The OT List, interpreted

Maura’s OT (that’s occupational therapist) at school sent home a list of “First Step Fine Motor Activities” to be done at home.  We’re to have fun! with this.  I’m having fun just reading the list, with a cup of sarcasm.  Let me share with you…

1. Practice touching thumb to each finger: touch, open hand, touch, open hand.

Now, in theory, this sounds easy.  Touch your finger to your thumb.  How hard is that?  Well, add motor planning problems and hyperflexibility to the mix and suddenly it’s not so easy.  It’s like trying to get a drunk to touch his nose.  But really, we spent ten weeks getting Maura to sign “Play” , first getting her to close her hands, then to get the thumb up, then getting one finger down, and so on.  Somehow, practicing touching thumb to finger seems like it’s going to be a long frustrating road.

2. Play with silly putting, rolling into a ball, pulling apart, rolling into small balls, using only one hand at a time.

We call this “Getting out the playdoh” … but one handed…let me refer you back to the whole “motor planning issues” thing.

3. Pick up pennies off the table and place into a container.  Flip pennies over and over.

Maura collects pennies from the coffee shop, lol!  We’ve been playing with pennies for a while now, putting them in pockets, putting them in purses, putting them in the piggy bank, putting them in her mouth…retrieving them from her mouth…

4. Squeeze various size sponges in water, bathtub.

sigh.  must we?  Sponges are squicky.  Not to mention she has a tendency of playing in the sink when she oughtn’t.

5. Squeeze out wash cloth in bathtub.

Or, squeeze out wash cloth from kitchen sink, drag it dripping around the house, using it to wash windows…sigh..

6. Twist open containers that are lightly screwed on.

I’d rather not.  She’s learned this.  To the point that she twists open the gallon jug of milk and takes a swig out of it.  Which squeams out the other members of the household who want to have some milk. 

7. Rip up newspapers into shreds.

Again, really?  I’m trying to get her NOT to tear up books.  She won’t get that she can tear up paper but not a book.  This is a nice concept, but the reality isn’t practical.  Not to mention, in the grand scheme of life, is ripping up newspapers even a good skill?  They’re doing away with newspapers as a whole anyhow.

8. String big beads or buttons.

This one is feasible…as long as she doesn’t eat the beads.  She’s gotten pretty good about not putting stuff in her mouth, but not enough to be left unsupervised with a box of beads.

9. Using a stand up easel, scribble, draw circles, draw, holding the marking in a proper grip.

Easel?  We don’t need no stinking easel!  That’s what she uses walls for, silly OT!  Why yes, I am considering buying stock in the Mr. Clean Magic Eraser.  Though even that won’t take permanent marker off glass.  Ask me how I know.

and now…for my personal favorite…

10.  Push thumb tacks into a board.

Thumb tacks?  THUMB TACKS?  Really????  Thumb tacks.  Right.  Because my child with the fine motor skill delay, with the flexible fingers that she can bend backwards to a 90 degree angle, who has to palm things to pick them up – she should be handling THUMB TACKS.

Last time I checked, thumb tacks were sharp pointy things that could become embedded into your flesh if not handled properly. 

Yeah…I think we’ll be skipping this one.

Happiness is…

…a warm puppy, as the old Snoopy cartoon goes.  But today, Maura told us what made her happy.  Which made us happy.

As we sat down for our Thanksgiving meal, Josh asked the kids what they were thankful for.  The older three gave answers like “Our family” and “Video games” and “pie” – you know, normal kid stuff.  Never ones to leave Maura out but knowing she wouldn’t understand the word “Thankful”, we asked her “What do you like?” 

She didn’t have an answer, so I tried a different tactic. “Maura, what makes you happy?”  I expected an answer like “Penguins!” or “Cookies!”  Both things that do make her happy.

Instead, her eyes lit up, she pointed to Josh and said “Daddy!”

I don’t think I have to post what Josh and I were thankful for today. 

 

Superpowers

We’ve all had those moments when we play the “If I had a superpower, I’d choose…” game.  Usually, I will choose flying, because flying would be ever so much fun.  But lately, I wish I had the superpower to say just the right thing at the right time.

Case in point – today, I had a chance to talk to the principal at Maura’s school about how disorganized they’ve been on all her seizure needs.  Instead of saying something like “You have to understand.  I have to put faith in the people at this school to look after her needs and protect her in case she has a seizure.  When people aren’t made aware that they’ll be the one giving her said medication, so when I come in to drop it off, I’m greeted with a blank stare – well, quite frankly, it makes me want to pull my child out of your school.  Because I am not convinced you will keep her safe.”

No, instead, it was more, “Well..uh…yeah…it doesn’t make me feel all reassured.” 

sigh.

I can write beautiful letters that get action done.  Proved it last week.  But when dealing with face-to-face meetings, I tend to either babble or stammer.  Oh, and I’m too nice when I should be firmer. 

So while flying would be cool, ever so often, I’d like the superpower of being that strong firm advocate for my child.  Until then, I’ll just keep bringing my husband along to meetings.

Parent/Teacher Conferences

So I had my first actual parent/teacher conference for Maura.  Her teacher offered a normal old P/T conference, as opposed to a more IEP conference. 

As a kindergarten student, Maura’s doing pretty darn good.  The issues they’re working on are normal issues, like getting her to sit and pay attention, sharing with others, etc.  She knows the routine, how to put her “I’m here” card in the slot, how to get her stuff for her seat, how to sit with the others during Circle Time…though no one can really sit still for Circle Time.  She lines up, raises her hand, does show and tell. 

Okay, so I come in and help with the “tell” part of Show and Tell.  And she has an adult with her at her desk, helping with her work.  And she leaves the class to go to another room for extra help.  And has been leaving early every day.  Oh, and wears a diaper (they figured that one out within an hour on the first day.)  And there’s that whole “can’t understand most of what she says” issue.  But other than all that, she’s blending it really well.  And I do mean that!

While her teacher and I were conferencing, Maura was off in one area, with the giant foam blocks.  She was stacking them up, until it was as tall as she was.  She went to put on the top piece – a half circle block – but as it was taller than her, in trying to get it up there, she knocked the whole tower over.  She had an “Aw man!” moment, then started rebuilding.  We watched as she built it up as tall as her again.  But instead of repeating what failed, this time, she grabbed another block, placed it on the ground next to the tower, and stepped up on it, giving her just the height she needed to get the top block up there successfully. 

It’s moments like these that remind us that Maura’s head does have a brain in it…not just sunshine and daisies, which is what we thought we’d find on the MRI. 

I was also happy to find out that Miriam is also doing extremely well in school, and that my slightly neglectful parenting (due to the Kaufman Center commute)  hasn’t caused any harm to her.  Woohoo!

A post from the small dark room

This is my tenth week of captivity Maura’s therapy.  Ten weeks of commuting, of packing an extra lunchbox of snacks, of sitting in a tiny room looking out into a big room, watching Maura learn how to talk, most of the time sitting on my own, sometimes chatting with a parent or caregiver about life and traffic.

It’s a very strange lifestyle, this one.

Maura has been quite the trooper.  She has manage to do this day after day – and they work her!  She sits at her little table, figuring out how to say words like “Tuba” – which is almost there – and puppy, which she can do.  She’s been identifying picture cards, learning practical signs for clothes and water and potty (not that she uses a potty…),  how to not only say her name, but her siblings name. 

After this week, we only have two more weeks left.  We were able to get a three month spot.  Part of me wishes we could do more.  Part of me is SO ready to get my life back.  This was the year I was going to have all four kids in school all day long.  instead, in the quest to do what is right for each of my kids, I’ve been driving Her Highness about the metro-Detroit area and pulled the boys out of school to home school them.  That left me with just enough time to sleep at night.  Most nights.

Taking Maura to the Kaufman Center has been a family effort.  The three siblings have been fantastic about pitching in, not eating the fun snacks that Maura brings, putting up with Mom’s lack of time for them.  Josh has picked up slack at home - he’s the main homeschooling parent, and has had to play chauffeur to kids while cooking dinner a good portion of the week.  My mother-in-law is on her second visit, to help out at the house while Josh went out-of-town on business.  Even my friends have helped out, watching Mim for me after school for a few days. 

All this so a little girl can learn how to say her name.  Yeah, it’s all worth it. 

After this, we’re going to take December off (though she’ll still get therapy at school, and we’ll be working with her a bit at home), and we’ll figure out something for January and so on.  Something closer to home.  I guess we’re greedy – we’ve seen how far she’s come in the past ten weeks and we want more of this type of progress!

A rare occassion

Maura is really ticking me off right now.  A rare thing indeed.

We’re currently in the the AVB therapy, which we have three weeks left of after today.  This program is extremely hard to get into, they only have ten slots, and the waiting list is longer than a line for a flu shot right now. We’d been on it for nine months before we got the call for a three month slot.  It is quite the committment, as I pick her up at noon, drive her the hour and fifteen minutes to where this therapy is located, sit in small dim observation room for 2 1/2 hours most days while she does therapy, then drive at least an hour fifteen back home (that’s without traffic.)

It makes for a long day for both of us.

Today, she’s being a pill.  She has been having a hissy fit for a good hour now at least.  We parents are asking only to observe, and right now, it’s a good thing, because I want to go out there and tell her to cut it out, stop it, enough already!  The concept of “wasting time” is so beyond her, it isn’t even funny. 

I feel guilty for being mad at her.  She can’t help a lot of what she does.  She’s yawning in between hissy fitting.  But I’ve had a long day, I’m tired, and I have to plunk down my credit card to pay for this current session, which makes me cranky as well – we’re still waiting on the reimbursement from the first session – that’s another post.

She’s calmed down now.  But man, what a waste of time today.  There was one funny bit – her therapist was trying to ignore the fit, so Maura decided to ignore her.  At least she’s right on schedule with the stubbornness!

Progress report – GOOD!

For the first time in a long time, a therapist gave me a progress report on Maura…and it showed progress!  LOL!

These things don’t happen.  Usually it’s all “Well, she made a bit of gain here, but she’s behind here, here and here.”  It’s the yearly slap in the face.  The “Hello!  You’re child is WAY behind!”  reminder.  The rest of the time, we celebrate all the little steps forward she makes.  But every so often we’re forced to sit down and face reality.  Me, I acknowledge that reality, accept it, then tuck it back in and go back to celebrating the little things.

This time though, I got to hear “She’s making great progress!  Look how the chart is going up and up.  We expect this progress to continue!” 

So that’s what that feels like.  It’s warm, and fuzzy and I like it!

This report was brought to us by the Kaufman Center, where Maura has been enrolled in their Train In program, which is applied verbal behavior.  They’ve tweaked it to work more with her apraxia, and she’s made huge progress in her speech.  Eight weeks ago, she couldn’t say her name.  Now, if you ask her “What’s your name?”, she can answer it.  For the first time, we were at the store, someone asked her what her name was, and she answered it.  Huge stinking deal in our world!  She is not only learning how to say words like her name and age, but it’s producing more spontaneous speech.  Like this morning at school, she told us adults “Come on!” as we walked down the hallway. 

Oh, her speech isn’t perfect by any means.  But it’s there.  And the forecast is that it will continue on.  Woohoo!

Also, from all reports at school, she is doing great there too.  She’s picking up routines quickly, maturing a bit more, enjoying the class.  The staff working with her have been great, which just makes my crazy life a lot easier. 

So yes, all is well and good in Maura World.  I’m hoping this trend continues!

My minor rant of the week

I’ve heard in the news lately about how people are pushing for insurance companies to cover autism therapies, including speech and occupational therapies.  I’ve also heard from another parent how they’re trying to get autism therapies mandatory in schools.

This is all well and good…if your child has autism. 

But, if your child doesn’t have autism, well, you’re out of luck.  Even if they need speech therapy, could benefit from what are commonly considered autism therapies – unless you have a diagnosis of autism, you’re not getting it covered.  It will only be covered for children with an autism diagnosis.  I know this first hand because our insurance would cover ABA therapy – a common autism therapy – but one of the criteria is a diagnosis of autism.  Which means if Maura could benefit from it…well…tough luck.  She’s not autistic. 

As a parent of a child without a solid diagnosis, I find this frustrating and a bit selfish.  Once again, we’re denied something because we don’t have a diagnosis.  My daughter is in just as much need for therapies as a child with autism, yet she’ll be denied insurance coverage of them as she doesn’t have the qualifying diagnosis.  A term I hate – qualifying diagnosis.  Imagine being in my shoes – “Why yes, your daughter would definitely benefit from this special speech therapy.  It costs $4000 a month though.  If she had autism, your insurance would cover it.  Oh…she doesn’t have autism?  Well then, you have to pay out-of-pocket.  Oh…you can’t.  I’m sorry.  Have a nice day.” *

Okay, maybe it wouldn’t be as blunt as that, but you get the point.

My thought is – why are these groups pushing for just autism coverage?  Why not have it cover any child with delays who could benefit from these therapies?  Why should a child like mine be denied because doctors can give us a diagnosis?  It isn’t our fault they don’t know what’s wrong with her.  She has developmental delays.  She needs these therapies just as much as the other child with a diagnosis.  She benefits from them just as much.  Yet she is apparently not worthy enough to include in this major push for coverage.

Let me make this clear – I’m not saying deny children with autism coverage.  Not at all!  They are deserving of this coverage.  What I am saying is that it should be a push to cover these things for ANY child in need, not just the one with the right qualifying diagnosis. 

/rant.

 

*this example was based on the applied verbal behavior therapy we are currently doing with Maura.  It is usually for children with autism.  It is costing us $4000 a month.  It is benefiting Maura tremendously.  However, we were not out of luck because they bill it as speech therapy and our fabulous insurance covers speech therapy.  If they billed it as an autism therapy, we’d be out of luck on coverage.  If we had our old insurance, we’d also be out of luck on coverage.  And yes, I am extremely grateful for our insurance.  Thanks Bill Gates!