Announcement #1 – Josh has the message boards on Wonderpuzzle up and running.  Feel free to join up, start a discussion, share the message board with others.  Everyone is welcome on the boards…well, except spammers.  Spammers shall be publicly mocked and swiftly deleted.

Announcement #2 – I’m still annoyed with Apple’s costumer service (see previous post.)  I’m half-tempted to go into the store and have them demonstrate on one of their iPads what does and does not scratch their “nearly unscratchable” iPad surface.  Can keys scratch it?  What about fingernails?  I’m wondering if Maura’s medical bracelet was the culprit in our case – which is more irritating to think about since she has to wear that bracelet and we told the fanboy salesman it was for her use.    Yep – still annoyed.  Anyway, feel free to share my story with others, as a warning to get the darn screen protector!

For those of you with two or three-year-olds…you know how they drive you crazy, getting into everything, coloring on your walls, emptying entire containers of milk onto the floor, emptying the dresser full of freshly washed and folded clothing?  You wonder sometimes if you’ll ever survive this phase?

Now, imagine that phase lasting not months, but years. 

Imagining it?  Years of cleaning orange juice off the floor, permanent marker off your windows, crayon off the ceiling of your car.  An exhausting thought, isn’t it?

Welcome to my world.

Having developmental delays means it takes longer to go through each developmental stage.  Maura was an infant for a long time.  I joked about our stay in Extended Toddlerhood.  We’ve been stuck in the Terrible Two’s and Three’s for what seems like forever.  I would happily go through this stage with a regular kid, because I know we’d eventually leave it behind.  With Maura though, we just hope we’ll leave it behind. 

Three years ago, I painted the girls bedroom a lovely shade of pink.  Maura scribbled on the walls in pencil and pen.  Eighteen months ago, while cleaning up the chips she spilled onto the floor and then stomped on, Maura scribbled on the dining room walls in pencil.  A few months ago, while I stepped out onto my front porch to talk to a friend on the phone, Maura colored the dining room walls again, this time with a dry erase marker. 

I am one with the Magic Eraser.

Today was another one of those days.  First, I heard this splashy sound.  Upon investigation, I found Maura, sitting on the floor in a puddle of water, playing in the dog’s water dish.  Which I think she added more water too.  I told her no, cleaned it up, went on my way.  While on the phone trying to make her a doctor’s appointment, Maura decided to get the carton of orange juice out.  Let’s just say we’re out of orange juice, the dining room floor is clean, and the table runner plus several wet towels from the day are now in the washer.  And her sister’s new gym shoes that she was wearing are on a shelf in the closet.  It would be nice if those didn’t get ruined before Tuesday, when school starts.

Yesterday, we got a big box in the mail (got to love how Amazon always chooses the largest box possible to put your items in.)  It was great.  She loved the box.  It was nice and long.  She placed a blanket and pillow in the box, and hung out in the box all afternoon.

Maybe we’ll get another box today? That would be lovely!

Maura loves music.  She loves to listen to it, sing along with it, dance to it, pretend to drum along with it.  She can connect to it quickly, which for Maura, is something else.

Now, I am proud to state that Maura has good taste in music.  Oh, she’d tolerate the Wiggles and Laura Berkner (is that her name? )  She thought they were fun enough. But she’s left those kiddie singers long behind.  In the car I’ve caught her singing along to Jason Mraz, Cheap Trick (“I Want You to Want Me”, lol!), Colbie Caillat, Sugarland, and of course, her first band crush Great Big Sea.  

Great Big Sea is a band out of Newfoundland – they’re a mix of traditional/Celtic/Newfie/rock.  My friend Bodi was the first one who told me to check them out.  As Bodi hadn’t steered me wrong yet on music, I went out and bought their Great Big CD and DVD combo.  She was right (of course), I did like them. 

Maura was almost three years old at the time.  One day, I decided to watch the DVD on my computer.  Maura came over, climbed up on my lap, stuck her thumb in her mouth and sat there, watching the guys play.  I was impressed.  I’d never seen Maura so enthralled by something…well, other than food.  I didn’t realize though how much she took in until a couple of days later.  We were in the car, I had the CD on, and suddenly I realized she was clapping along, raising her hands like the audience did while yelling “Hey!”, just like on the DVD.  At a time in her life where something like that would take weeks for her to learn (seriously, Ring Around the Rosie took her a good year of watching to figure out), Maura picked up this in days.   She also quickly learned to sort of sing along with one of the songs.  Again, this was a child who could barely talk, but there she was singing “Oh me, oh my”.  I’ll admit, my reaction was sort of “Holy Crap!”

Maura, age 3, watching the Great Big DVD

Something about the band reached her, and I loved their music as well.  The other kids also got into it.  Needless to say, we became big fans around here. 

Of course, the fact that she enjoyed drinking songs caused a couple of problems.  Like when she was about to start preschool…it was a preschool class for developmentally delayed children, so the parent meeting was an intimate gathering (four parents.)  The teacher asked one parent if her child enjoyed music.  The parent said “Oh yes!  We sing the ABC’s all the time!”  Another parent chimed in.  “Oh, we do to!  We also love the “Wheels on the Bus” song too!”  The teacher then turned to me and asked “Does Maura like music?”

“Oh yes!” I said.  “She actually has a favorite band.  They’re called Great Big Sea, they’re out of Newfoundland…her favorite song is “The Old Black Rum”…so…um…if she should happen to say “rum”, that’s why.  But it’s a traditional Irish song….”  Okay, it’s not.  But I realized the other parents were eyeing me funny and it was probably not the best introduction of our family life to the teacher.  Luckily, the teacher was very cool about it. 

Maura at her first Great Big Sea concert

We’ve been to two of their concerts so far. The first was when she was almost four.  The look on her face when they came out on stage was priceless.  I think it took the first song for her to realize that yes, they were live in front of her and not on the tv.  The entire concert, while they played, she sat on my hip, thumb in mouth, watching them intently.  In-between songs, she’d clap along with the rest of the audience, and then stop, stick her thumb back in and start watching again.  She was adorable in the little concert tee I found in her size.  The people around us were great too, one giving her a little flag of Newfoundland, another offering to hold her for a bit.  Two teen-aged girls snuck down to the front by us and were dancing with her (until security made them go back to their seats, lol!)  And the band was cool to her too.  Bob got down to her level and played to her.  Alan came across to give her his guitar pick.  All in all, it was a great night.   

The next time they came into town, we went as a family, you know, so we could overwhelm more kids at a time.  And now, they’re going to be back in town.  I have front row seats for Maura and I and a friend.  I can’t wait!  They’re a great live band, it’s always fun, and they have the best audience who think nothing of me  bringing a child or four along. 

Now, at this point, you may be wondering where the title of this post comes in.  “Sea of No Cares” is a title track to one of their albums.  The song itself is about dating, falling in love, not caring about what others think.  But for us, just the phrase “sea of no cares” really sums up Maura in a way.  In a way, she has no cares.  All is good in her world.  She’s a happy little goldfish swimming in a sea of no cares.  When you have a child like Maura, you tend to worry about how they are, what they’ll be.  But eventually, for me, I realized that Maura was happy.  She had no real reason not to be happy.  Her world is good.  And this song reminds me of that when I need a reminder. 

Sea of No Cares – Great Big Sea

Once upon a time, I put little Maura on a carousel horse.  She loved it.  Giggled as the horse went up and down.  Great! I thought.  As a child, I loved the carousel.  It was always my favorite ride at the church carnival.  The other three kids had enjoyed it, and now Maura did too.

Seasons changed, no carousels were in our path for a while.  Long enough that Maura forgot she loved it.  I hadn’t, so when we came upon one again, I decided to get her on it again.  In line, she began to freak out.  She shrieked, bit her hand, and couldn’t decide if she wanted to do this.  She wanted to get on it because other kids (including Miriam) were getting on it.  But suddenly, it scared the ever-living daylights out of her.  Other parents eyed me funny.  I thought that if we got her on it, she’d be fine.

I was wrong.

She refused to get on a horse, giraffe, or any other animal.  But she didn’t want to get off.  So we sat on one of the benches on the carousel instead.  Maura kept shrieking for Miriam, who was happily seated on a horse.  Maura was finally convinced Miriam was fine, and settled in for the ride, clinging onto me the entire time.  At the end, she booked it off the carousel, relieved the ordeal was over.

A couple of weeks ago, we went to Greenfield Village .  Miriam loves the carousel there, and so she and I headed that direction while Josh took the other three kids elsewhere.  They met us there as the ride ended, and I wondered if Maura would want to go on.  She eyed the carousel, I asked her if she wanted to ride it, she said “No!” and walked away. 

Something changed between then and today, when we went back to Greenfield Village with friends.  The other kids all raced up to the carousel.  Maura followed along.  I decided to let her try it again, fully prepared for shrieking and freaking out.  I found one of the animals that don’t move that was right next to a bench and helped her up on it.  My plan was that if she freaked out once the carousel started, I could whisk her off the animal and we could sit on the bench.

Instead, Maura once again fell in love with the carousel.  Oh, she had an iron grip on the bar at first, but she instantly liked it. Her confidence built up more as we went around and around.  She looked at me and said “Sit down!”, pointing to the bench.  So I did.

When it came to a stop, she pouted a little.  But the other kids in our group ran out the exit and right back into the entrance to the carousel (there was no line), so we rode again, this time on one that moved.  Maura was now in love with it, once again telling me to sit down.  I said no, as she was on the outer horse…I wanted to spot her.  Also, I didn’t know how she’d react when it started moving.

Part of the fun of Maura is she doesn’t hide any emotions.  When she smiles, she does so with her whole face, sometimes her whole body.  As the horse took off, her whole face just lit up with pure joy.  She was once again in love with the carousel. 

We rode it three times today, and I expect many more carousel rides in our future.  It’s a good thing I enjoy carousels too!

Well-meaning strangers say this to me all the time – “Oh, she will grow up so fast!”

I will admit to having respond once or twice “No, no she won’t.”

They mean well, which is why I usually just nod and smile.  Because they have no clue how much I’d like for my little girl to actually grow up.  Oh, she’ll grow upwards.  I joke that she’s nearly as tall as me (which isn’t hard to do.)  But as she gets older, the reality becomes more clear – mentally, she probably won’t grow all the way up. 

That doesn’t mean we’ve given up on her.  We want her mind to keep developing and have fought hard to ensure that all the pieces are there to help with that.  But right now, our realistic goal is to get her developmentally about age twelve.  Twelve year olds can do a lot for themselves – dress themselves, make small meals, run a dishwasher.  They’re semi-independent.  We’d like that for her.  Our wildest dream is complete independence.  Our “right-now” dream is potty trained.

In some ways, Maura is comprable to her peers.  She’s social, into playing with dolls and singing along with music, loves to shop and dress up.  She loves shows like iCarly and going to the movies.  But then she can revert to the maturity level of a two-year-old, sucking her thumb and coloring on herself.  Most of the time, she seems to be up to a three to four-year-old level.  She’s trying to write, she’s kind of dressing herself, she is learning letters and numbers, she tries to pour her own cereal and milk.

Mostly, she’s just Maura.  She’s hard to pin down developmentally.  She’s all over the place, not doing things she should be doing, and doing things we never expected of her.  Maura continually surprises us and delights us with things she can finally do.  We appreciate every new thing, every baby step towards maturity. 

But growing up too fast?  No.  She’s not doing that.

As you can see at the top of the blog, we have our awareness symbol.  I actually did come up with the design myself, and it actually does have some meaning behind it.

The question-mark shape is obviously tied to the fact that we deal with lots of questions.  The puzzle pieces inside of it represent the puzzle we’re trying to put together.  The orange and yellow were picked because they are two of Maura’s favorite colors (along with pink), but also gender neutral.  The silver puzzle piece represents that elusive last piece of the puzzle that would complete it, plus silver is the awareness ribbon color for children with disabilities. 

So that’s the general idea behind it.  Some people have questioned our use of the puzzle pieces, as they are normally associated with autism awareness.  However, I did poll several parents of autistic children on a special needs board I used to frequent, and they all actually said that the puzzle piece made sense for our cause and gave it their virtual blessing.

Ever since we had to start using your online pharmacy company, there have been issues.  A bad bottle of meds, a shipment sent back because the bottles broke, not being able to re-order meds until a specific time which meant we wouldn’t have meds for vacation.  Every couple of months I’ve been on the phone with you, jumping through your hoops like a good girl, trying to be nice to your customer service people.  Because frankly, it’s not their fault your rules and procedures stink.

But now…oh, now you’ve gotten my back up.  Not a smart move.

Backstory – my daughter Maura has a seizure disorder.  Her neurologist prescribed Trileptal, to control her seizures.  It worked.  It worked beautifully.  Within a few weeks of starting it, Maura made several developmental gains.  She had no side effects.  It was a beautiful relationship Maura had with Trileptal.

And then you stepped in.  First, you decided we had to get it through you.  It’s considered a maintenance medication, as she’ll be on it for years, therefore, it’s less expensive for our insurance to fill it through your company.  In theory, it should have made my life easier.  I mean, prescriptions dropped off at my doorstep?  Wonderful!  Except things went wrong.  It didn’t make my life easier. 

Then you decided to screw with my daughter’s life. 

The last shipment we got has started this chain of events.  The package was broken along the way.  I called about it when I read on the FedEx site that her medication was being sent back.  We were running low and since it had taken three weeks from when I ordered it to this point, I was concerned that we’d be out of medication before the new shipment would even be processed.  The customer service rep said to me that the generic was being shipped out.  Generic?  What?  He used the full name (oxcarbazepine), which is the type of medication Maura was on.  Not knowing if there was a miscommunication, I decided to wait and see.

The package arrived and inside, a full shipment.  Four bottles of generic meds.  Not our beloved Trileptal (and let me tell you, you do come to love your child’s seizure meds when they work well.)  First thing I did was call the doctor.  He explained that there shouldn’t be a difference as it should be the same meds, he’d been prescribing it to patients, and most generics were made by the same company as the brand name.  I read off the company name and he said “Oh.  No, that’s not the same company.”  He assured me I could call if there were any problems and he’d get her switched back.  Reassured, I decided to give it a try.

Within the first week, her teachers reported that Maura was very cranky.  When I say cranky, I mean her teacher who adores her called me up and said “I’m glad today was a half day, she’s being a little beast!”  Keep in mind, Maura’s usually a happy, laid back child.  She continued to be cranky, with moodiness added in.  I took her and her sister to dance class.  Maura has to wait while her sister goes first.  She spent the entire forty-five minutes howling and screeching in the hallway because she didn’t understand why she couldn’t dance with her sister.  She knew this the weeks before the medication switch.  She suddenly became afraid of showering – the girl who loves the water so much she should have been a mermaid, now afraid of the shower?  Ridiculous.  Last weekend, she had an episode that we think might have been a partial seizure.  She got scared and was shaking.  Afterwards she was fine.  But we were done with these meds.

So I called the doctor, and they called in a new prescription.  The box arrived today and we were all excited.  “We” meaning myself, my husband, her siblings who were tired of her screeching, her two teachers and her aide.  I glanced at the invoice slip…and to my surprise saw that I owed you $80.

Now, this should not be!  So I called…once I found a phone number, then hit zero because I didn’t want to refill a prescription, but that was the only phone number on the invoice.  I finally got a human being, who explained to me that because the prescription was a name brand, I was charged $80.  I asked for clarification, because it didn’t make sense.  I was told that since the doctor chose the name brand when there was a generic available, we had to pay $80.  I said “Even though we tried the generic and it caused side effects?” 

Yes, that’s right.  If I want the medication that doesn’t turn my daughter into a moody, cranky, water-fearing girl, I have to pay $80 a shipment for that privilege. 

Even better – according to your customer service representative, my options are -

A) an appeals process that will take weeks and we may be denied anyway. 

or

B) have the doctor try a different medication that doesn’t cost as much.

That’s right!  I’ve been told by your company to mess around with my daughter’s seizure medication by “trying new medications”.  You may sell prescription medications, but you obviously don’t know how they work.  Or else you know that you don’t just switch seizure medications, and that when you find one that works and doesn’t cause your child all sorts of side effects, you stick with it like glue.  I refuse to screw around with my daughter’s seizure medication so you can save a few dollars. 

I had the customer service rep file a formal complaint, because I was told there was no one else I could talk to about this matter.  No live person was available who could talk to me about this.  But maybe I can get through to you via the Internet.  I can at least voice my disgust for you here. 

All I want is the medication that makes my daughter feel good, controls her seizures and helps her develop the best she can cognitively.  You are against that because it will cost you too much money.  Ergo, I now feel that my daughter’s well-being isn’t as important as your profit margins. For that I say, thanks for nothing. 

Sincerely,

A really ticked-off mom

P.S. – thanks for following me on Twitter after I posted that I hated you.  Maybe someone will actually read this now and something will happen.

Tap to Talk

I found this out through a friend – it’s a communication device that can run through a Nintendo DS.  I’m half-tempted to get this for Maura just because she’s always trying to steal the older siblings DS’s.  I think this is a really great tool for children who can’t communicate. 

Price-wise – a Nintendo DS is about $129.  The Tap to Talk is a yearly subscription of $99 a year.  Not too bad.  Especially since other devices are much much more in price.

I’m going to do my first cross-posting on blogs, so if you read this here, you’ll read it on my other one

The reason for the cross-posting?  Josh is once again doing the Polar Bear Plunge for Special Olympics Michigan.  It’s a fundraiser, where crazy souls have a good excuse to jump into freezing cold water in Michigan in February.  Josh did this last year and raised $750.  This year, he’s round his goal up to $1000.  Someday, we hope Maura will take part in Special Olympics, we might as well start helping out now!

I know times are tough and people are broke.  Some can give more, some can only spare so much.  We don’t care about amounts.  Five dollars will mean as much as fifty dollars.  We will appreciate anything, even if it’s just a good thought and words of support. 

For more information, click here…

Every so often, I run across a post or email, singing the praises of “Welcome to Holland”, or some other similiarly veined essay about life with a special needs child.  Inevitably, it will have some line about “When we got the diagnosis…”.  And there, I lose my ability to relate.

Oh, sure, I can relate to some parts.  Little things like finding out there’s something wrong with your child.  That their future isn’t what you thought it would be.  But no where will you find an essay called “Welcome to LimboLand” which waxes poetically about having a child with special needs but no label to describe it.  No one ever writes about that one defining moment when the doctor said “We may never know what your child has.”  No one ever talks about going from doctor to doctor to specialist, spending hours online searching for that elusive label.

No, most of these essays are about coming to terms with the diagnosis of X or Y or A, and how it may not be what you expected, but it could be something more.  You may have wanted to go to Italy, but hey!  There are good things about Holland!  I’m sure they are.  But we didn’t get to Italy or Holland.  No, we’re in limbo, still waiting to be told what our destination is.  At least in Holland, you know where you’re at and there’s a map for it.  There’s a bit of comfort that comes with a label.  There are expectations and possibilities and guides for the future.

Without a label, there’s no map, no guide, no destination.  Instead, you’re a pioneer, naming things along the way, hoping for the best, prepared for the worst, and yet still caught off-guards at times.  There’s no support group but the one you make for yourself.  And there are questions.  Lots of questions.  Questions and implications, as if you haven’t spent the past months and years trying to find a label, a diagnosis.  There’s this belief, misguided as it is, that if you go to a doctor, they will give you an answer.  Guess what?  They don’t always have an answer.  It doesn’t mean they’re a bad doctor, or we’re bad parents who aren’t trying hard enough.  It just means there isn’t an answer.  No trip to Holland, destination unknown.

When your destination is unknown, you have two basic choices – go crazy or enjoy the ride.  Me?  I choose the enjoy the ride.  We make stops here and there, collect something once in a while, but otherwise, we’re driving without a map or an end to the route.  If we see something that interests us, we check it out.  Otherwise, we roll along merrily.  We’ve check out Holland, it wasn’t for us.  I check out Crazymakingland as well, it wasn’t that great either.  We peeked at a few more destinations, they weren’t meant to be.  So we wander.  We wonder while we wander, but always enjoy life. 

They say getting there is half the fun.  I’m not so sure about that.  But I also know that making the best of things really is the way to go here.  So forget Holland.  We’re making the best of LimboLand.