I’ve done the back to school thing for years.  It usually includes a new pair of gym shoes and a new backpack.  Then we wait to find out what teacher which child gets, and all is good.

With Maura, there’s a few added items to my checklist…like…

- waiting to find out who her new aide is (check)

- medical training meeting with teacher, special ed teacher, new aide, OT, ST, principal, office staff and nurse (check)

- order new medical id bracelets as the old one broke (check)

- order new orthotics (check)

- order a case of diapers to leave at the school (check)

- have labeled bottle for prescription meds ready to be left at school (check)

- have emergency medication ready to be handed over to the school (check)

- get copies of the neuropsych’s report to the appropriate people at school (check)

- make new seizure info pamphlets to hand out to school staff members (check)

Oddly enough, what I don’t have for her yet?  A backpack and new gym shoes.  Hmmm…maybe I should work on that.  School starts in a week.  In my defense, I can’t get the shoes until I have the orthotics.  But she’ll need a backpack, as I threw away her old one already.  Ooops.  Oh, and a new thermos to hold her beloved mac and cheese, her favorite lunch.  Now that’s important!

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!

Maura loves riding on bikes.  However, we’ve had a problem finding a bike that fits her.  Developmentally, she’s about age 3.  Physically, she’s 7, at the 75th percentile for height, and is all legs.  Needless to say, she was ridiculous on the little trike we had that she could manage.

I started searching online, and found that special needs bikes are obnoxiously priced (just like most special needs equipment.)   The only one I’d found that would have worked for us was a trike tag-a-long.  At $300, it wasn’t too badly priced, however, it wasn’t cheap either.

One day, we ended up at the relatively local bike shop, and were browsing.  The guy there asked if we were looking for anything particular.  We pointed to Maura and said “We need something for her.”

The guys at the bike shop went out of their way to help us.  Seriously, the customer service we got from them was excellent, go shop with them (see link above.)  After going through ideas, I was looking at a regular tag-a-long bike and said “Could we just put training wheels on this one?”

And so they did.  And then told us if it didn’t work out, to bring it back.  They wanted to make sure we’d have something we could use.

Well, we finally got around to using it and Maura is in love.  The first ride, Maura made all sorts of happy little sounds of wonder behind me.  We then went from “Wow” to “Whee!” to “Faster!”  The main problem is Mom having to haul her about, because Maura doesn’t always pedal and her mother is out of shape.  Yet another reason to add to my motivation for getting in shape again.  So I can haul Maura’s fanny about town without embarrassing myself.

Meanwhile, we also found out about these gianormous training wheels that can go on regular bikes.  The school got her a pair and put them on a bike…so on her birthday, I walked in and found this -

Yeah, we’re going to have to do this for her.  Right now, she’s happy riding with us.  But sooner than later, she’ll end up with her own independent-riding bike.

Sometimes, getting what your child needs is a series of steps, contacting the right person, hunting down the correct clinic, having a certain piece of paper, doing the right sacrificial rite under the light of a full moon…

This month’s quest – new orthotics.

For those of you not in the know, by orthotics, I mean foot support.  In the past, Maura’s had full ankle braces that strapped around her foot and ankle, to hold her flexible flat feet in the right position.  They’ve been modified to fit under the ankle, then modified some more to fit just inside her shoe, no strap required.  Then we went back to the strap, which she hated, so back to no strap. 

We kind of let the orthotics slide over the summer.  By now, she’s certainly outgrown them.  It didn’t actually occur to me until I made Collin an appointment with an orthopedic surgeon (he broke his wrist) that Maura would need new orthotics.  Very soon.

Oops.

Now, I’m sure I could go back to the Great and Powerful U of M for orthotics, where we have been going for the past two years.  However, it is SUCH a pain in the tush to go there that I decided we would go elsewhere.  I’m tired of rushing out the door early in the morning to drive into Ann Arbor to spend fifteen minutes at least in the parking garage finding a spot, then hike all over the Taubman Center, then wait an indefinite amount of time to see the orthopedic doctor, who prescribes the orthotic, then hike down a hallway or three, plus an elevator, into a different section of the hospital to wait another indefinite amount of time in the orthotics department, only to have to return in a couple weeks once the orthotics are made, repeat, make follow-up appointment for six weeks from that point, rinse. 

I’m tired of jumping through those fiery hoops.  I’m going to try new ones.  Which will require finding a new orthotics place, then contacting my doctor for some sort of prescription, then going to the appointment, blah blah blah.  I’ve done it before, I can do it again – right?

But I need to do it soon.  I can’t buy Maura new gym shoes without the orthotics.  Because the orthotics skew her shoe size.  I may have to send a note to the gym teacher if we have to wait until after school starts – see, last spring, I sent her to school in her Keens (which are hybrid athletic shoe) and the gym teacher told her aide Maura couldn’t participate in gym class because she wasn’t wearing proper footwear.  Uh…really?  That teacher has since retired, hopefully the new one is more open-minded about Keens.