Let me start off with stating that I’ve never really belonged to a support group.  I had friends with kids with different special needs, and we shared and supported each other as we could.  But there was no larger organization I could join, that would give me inside information, lists of places to go, or any sort of help or aide.  We’ve never qualified for extra help outside of school, there were no clubs or walks or awareness months.  For the most part, I did my best.  We managed, and others did try to help us out.

One of the things friends in Michigan worried about when we moved here was having support for  Maura.  I’ll admit, I was a little nervous about it  myself.  I also was worried about having pulled her out of school, away from her fabulous teachers and therapists.

Now?  Less worried about all that.

See, Maura’s new school is part of a bigger system that helps people with intellectual disabilities.  Part of joining the system is that you go see their doctor, psychologist, therapists…today, we saw the doctor to get a new rescue medication for Maura’s seizures (one the school staff is trained to use – this one will be orally administered, as opposed to her current one, which is rectally given…yeah…yikes…luckily, we’ve never needed to give that to her!)

The doctor there?  Is totally  hooking me up with stuff!  It was a “What do you need?  Here’s what we have.”  I went in expected a prescription.  I left with that, plus forms so we can get her medications for free, plus news that we could qualify for other sorts of aide, plus when I asked about an eye doctor recommendation, she said ‘Oh, we have one here, I’ll get you an appointment.”  She also said that they will be able to help us get Maura’s new foot orthotics when we need them.  Did I mention all of this will be at no cost to us?

What a novelty!

She even filled out the forms and addressed the envelope for me for the long term disability coverage!  I’m feeling all warm and fuzzy just thinking about it.

Then I get home to find a big envelope for me.  Inside is a note from the PT I haven’t met yet with a whole list of groups and activities Maura could participate in.

It’s weird – we’re finally part of a group.  The group doesn’t care what label is attached to you.  It’s a “You need help?  Well, we’re here to give it.”  And the government is willing to help us out too.  How novel.

You know, people here are always going on about how Ireland’s just a poor little country, they can’t do much to help us out, but they’ll do what they can.  I have to say – so far, they’re doing great.  The U.S. could learn a few things from the Irish.

Maura’s finally back in school.  For about four weeks – then they’ll let out for the summer and start back again in September.  They’re still arranging busing, so I’m commuting her via the train so she’d be able to start right away.

Maura had been doing inclusion in the States, mainly because that was the only option given to us.  But it did work for her, even if it meant a jammed pack schedule.  She spent part of her time in a regular classroom with an aide, and the other part either in a special ed room or with a therapist.  The girl was all over that school, lol!

They do have inclusion here in Ireland, but right now it’s a little difficult to do if your a child with many needs as special needs assistants (or as we called them, aides) are a shortage.  Most SNA’s here seem to be working with two or three kids.  And while one school was more than willing to take her, they couldn’t because they didn’t have a spare aide to devote just to Maura.  It would be the same story everywhere, as SNA’s are usually handed out in the beginning of the school year and the budgets have been cut, so schools are actually losing SNA’s, not gaining them.

Our other option was a special school.  I called around different places, talked to different schools.  It seemed most of our alternatives dealt with behavioral issues more than developmental ones.  Let’s be honest – Maura doesn’t need to be in a class full of kids with behavioral issues.  So we finally took a look at the special school for kids with moderate disabilities.

To be honest, my first instinct was “MY daughter doesn’t belong there!”  We did visit, met everyone, started the process of enrolling her mainly because we had run out of options.  Then I met the social worker, who was quite nice and listened to concerns I had about Maura being in a special school.  Then we met with the psychologist, who came to assess Maura, and she was even more assuring.  Honestly, after her visit, I re-thought my stance on the school.

Part of the change was their attitude towards life skills.  Let’s face it – Maura’s a bright little girl, but academics aren’t her strong point.  At the special school, while they do some academics, they really focus on life skills.  They were surprised I hadn’t gotten more help with potty training Maura.  (Please note – her old staff were amazing, love them all still.  They were referring to people being sent to my house to help out.  Which I might have actually laughed when they asked about that.  And respite care.  I’m still giggling over that.)

The other thing that helped sway me to this option is that they take the kids swimming every week.  Maura LOVES water.  LOVES it.  Her knowing how to swim would be such a relief to us.  Not that we’d ever let her swim on her own (hello, seizures!)  But if she should happen to fall in when we aren’t right there and can keep herself afloat?  That would be a good thing.

So yesterday, Maura started at the special school.  She impressed everyone when she blew me a kiss and said “Bye!” without a second thought. When I picked her up, they were even more impressed because she had a great day, no problems, adjusted instantly to the settings, and didn’t bat an eye when another student had a meltdown. She met me babbling about trains and class and cake!  Yes, they made a cake and she had a piece to bring home.

Today was more of the same.  The SNA who brought her out was actually impressed with how much language Maura was using that day.  Of course, when she saw me, Maura was SO excited, she was saying “Mommy!  Mommy!  Mommy!”, which cracked me up because she never calls me “Mommy”, usually just “Mom”.   They had another exciting day today as the fire brigade came for a visit and let the kids try out the hose.  The SNA told me that the other kids had to be shown how to pull the lever back to turn on the hose, but Maura knew instantly what to do.

On Fridays, they go for a walk to the shops, so I’m to send two euros with Maura so she can buy something.  They’re going to find out that Maura already has some mad shopping skills.  She’s had years of training at our old coffee shop.

Meanwhile, the girl is worn out!  We walk to the train, ride the train, then walk from the train to the school.  Then it’s five hours of school and a return trip.  Today I found her in her room…she fell asleep while sitting up.  Of course, this is after she took my eye cream and eye shadow brush and painted her bedroom wall…sigh…

No, not Maura’s interest – but interest in Maura.

We’ve been lucky to have some great doctor’s to work with.  Her pediatrician and her neurologist I would highly recommend to anyone.  They were great with us.  But they were only human and contained only so much knowledge – they couldn’t figure out what was going on with Maura.

We’ve meet other specialists who were nice enough, but Maura didn’t seem to spark their interest.  I will say, Maura’s old neurologist warned us about this years ago.  He said that we’d probably never know what she has because medical science isn’t interested in kids like her – aka kids who are pretty healthy, have no regression, no “big” issues.  Maura just wasn’t interesting enough to the medical world.

This week we were lucky enough to fill a cancellation at the neurologist we were hoping to see here in Dublin.  It was really good timing for us.  Friday, I called the GP (general practitioner) for the referral to the neurologist.  They sent it over that afternoon. Wednesday, they called with an appointment for the next day, asked if I wanted it.  This isn’t my first pony ride.  I know it can take months to get into a specialist’s office.  When they offer you a cancelled spot, you grab it and say thank you.

So Thursday morning, Maura and I rode the train down to City Centre, then caught a taxi to Temple Street to the private clinic.  We didn’t wait too long before Maura’s name was called.  We hopped off our chairs, grabbed our bags, followed the doctor into his (very large) office/exam room, where Maura shook his hand and said “Hi Doctor!”

The funny part with that is that I didn’t tell her he was a doctor.  She figured it out on her own.  She took in his white coat, the exam table and other surroundings and figured it out all on her own.

One of the first things the doctor said was how surprised he was with how able Maura was.  He didn’t expect her to walk into the room all on her own and say “hi” and start going through a book after reading the notes from the Cleveland Clinic that the GP sent over.

See, on paper, Maura is moderately disabled.  There’s mild, moderate and severe.  So she’s mid-range.  Not completely incapable, but not semi-independent either.  On paper, she seems somewhat incapable of learning, unable to manage on her own.  The phrase “IQ of 47-50″ will make one think that.

But Maura’s not on paper.  She’s a bright little package of flesh and blood, who is pretty darn able for all that’s going against her.  She’s socially savvy.  She’s always paid attention to what was going on around her and has learned from that.  She has always made progress – slow, but steady progress.

This doctor saw all that.  He was impressed with her, how she’s managed to learn steadily, that she could pedal a bike, dress herself.  After weeks of dealing with schools and hearing “Wow, so she’s far behind.”, his positive attitude was refreshing.  Not that the schools were depressing – just reality checks, one after another.

We sat and talked about Maura for a bit, him asking about tests and when she had her first seizure and what kinds of seizures she had.  He felt that her different “spells” were probably seizures trying to break through – like the time at school she did a head bob and full body shudder, which means Maura has more seizures than we see.  But for the most part, they don’t interfere with life, thank goodness.  He also felt her bendy fingers were really hyper flexible and asked if anyone mentioned that she had some dysmorphic features.  I said “Oh yes” and told him how one doctor said Maura had a “syndromey look” – aka, she looked like someone with a syndrome.

He ended up taking pictures of Maura with my consent, so that when he has lunch with his colleague the geneticist, he can share her case with him.  I can’t help but get a little excited about that, allow my hopes that we’ll could end this 7 year mystery and have a name for whatever causes Maura’s delays.  I know that it’s a shot in the dark, but it’s the most hopeful thing we’ve had for Maura’s medical side that’s happened in years.

He’s also recommended Maura have another EEG, check out her brain waves and all, see what’s going on in that head.  I’m all for that as well. She’s only had one in her life, after she has the first seizure.  We’ll see him again in 6 months, unless something comes up.  I’ve been told to feel free to call with any questions or concerns or if I feel Maura’s seizures have increased.

I left the office feeling secure about Maura’s care here.  We found a lovely GP for every day issues, and now we have a great neurologist.  Having left a great pair of doctors behind, I’m grateful to have found another great pair.

Also, after the disappointment that was our Cleveland Clinic visit, where I knew almost instantly that we’d find out nothing new and it was a waste of time, this is refreshing.  Doctors are finding Maura interesting!  A member of the medical community is intrigued by her case.

And in generic Maura news – she has managed to keep up progress despite me being her only teacher.  Usually Maura is not receptive to me trying to teach her things.  But I guess she’s as desperate as me, lol!  She’s learned words like “kingdom” “Julian” and “pirate” thanks to tv (“kingdom” comes from Ben and Holly’s Little Kingdom, a kiddie show, “Julian” from Penguins of Madagascar, another kiddie show, and “pirate” comes from “Pirates of the Caribbean”…yeah, not quite sure how that one happened.)  She’s discovered “Doctor Who” and is fascinated by the show now and stole my Tardis.  She calls Rapunzel “Hairbrush” and the train “crane” (close enough).  She now genuflects (kinda) at church and can tag her train pass – heck, she knows how to walk to the train if we let her.  She also is learning to wait for the green man (aka “safe to cross” signal at the lights) and is obsessed with pressing those crosswalk buttons.

It hasn’t been all sunshine and skittles, the girl had given me attitude on more than one outing, but she’s learning and settling in better and better.  Hopefully we’ll hear back about school situations and maybe even get her potty trained one of these years?  Meanwhile, the girl is still enjoying life to the fullest and getting bigger every day.

The other day, I was sitting in the kitchen, and Maura comes in, headphones on, Miriam’s iPod in her hand.  She walked over to the fridge, grabbed a yogurt tube out of it, walked over to the counter, placed the iPod on it as she opened the yogurt tube, picked back up the iPod and walked out of the kitchen.

It was the funniest thing to be – partially because it was so flippin normal!

The back story is, Maura’s iPad ran out of juice.  In an attempt to make her happy, Miriam loaned her iPod to Maura.  Maura spent way too much time that night listening to music.  Great Big Sea to be exact.

And she just came in here, iPod blaring, big smile on her face.  I could hear Great Big Sea playing…and as she sat down with a glass of milk, Maura started singing along to “Sea of No Cares”, with a big smile on her face.

Poor Miriam is never going to get that thing back, lol!

As I write, Maura is sitting across from me at the table, thumb in mouth, watching her most beloved Tinker Bell and the Great Fairy Rescue movie.  She LOVES this movie.  She LOVES Tinker Bell.  We have the dolls, the night gown, and would have a shirt if they made a cute one in her size (they make them…but not quite right for Maura.)

But more on this later…

For a girl with many issues, Maura survived our trek to Ireland pretty darn well.  She didn’t flip out when the movers came and packed up her room.  She walked in, saw the empty room, slapped her hands on her cheeks and said “Oh no!  It all gone!”  with great surprise.  So I showed her the truck where they were putting boxes in, told her how they were going to move it to a new house, and we’d go to the new house, and she was fine.

We spent two nights at a hotel after the movers packed up our stuff, which she was good with.  Maura was very watchful of us and our suitcases though.  Everything else had disappeared, she was going to make sure she held on to what was left and every family member!  In one sense, it was a break for me from my constant head-counting, because Maura was doing it for me.

Her good humor lasted for most of the journey, despite the delays.  I was worried that she might freak out when the airplane took off…Collin did at age 2 the first time he flew.  He saw the ground leave, screamed and lunged for the door.  But Maura thought it was amazing.  She yelled “Woohoo!!!  We’re fying!!!!”  Which after being delayed for almost two hours, the rest of us sort of felt like shouting that as well.

We got stranded in Chicago, thanks to those delays, and Maura had enough of hotel life and travel.  At the hotel, she grabbed her suitcase, said “I want plane.  I want house.”  But the next day, she was excited to get on an airplane again…a little too excited.  All wound up makes Maura a loud girl, especially when she discovered that her  most favorite Tinker Bell movie was on a screen in front of her.  Like many people, Maura doesn’t realize that she doesn’t have to shout while wearing headphones…so she kept shouting at us.  Kudos to the older man in front of us, he never complained or looked cross-eyed at us, or even harrumphed.  She didn’t like it when they’d make an announcement, which would pause the video.  When she couldn’t figure out which button on the screen to push, she’d grab my hand and try to get me to make it work.

Then I made the fatal mistake, at the end of the movie, during the credits, of turning it off.  Holy crow!  She screamed like a cut off fingers!  I quickly said “Do you want to watch Tinker Bell again?  Great!  Let’s turn it back on!”  When it ended the second time, I let her know I’d restart it before doing anything to the video, and there was no shrieking.  Same with the third time I restarted it….it was during the third viewing that she finally fell asleep.

Once we got to Dublin and into the house we’re staying in while we house-hunt, Maura was fine.  There was one meltdown at the grocery store the second day we were here…but who could blame her?  We had put her through a lot and she went through it all with a smile and willingness to cart a back pack and suitcase around.  We made it through two TSA screenings, meds, orthotics and all.

FYI – about med screening – they will say “Oh, we can just x-ray it.”  Which is not what we wanted.  You really do have to ask about hand-checking.  And while the first agent we dealt with in Detroit was nice, her supervisor wasn’t so much, as she was telling the agent to get us moving.  Also, TSA agents will repeatedly tell your child to take her shoes off, and you’ll have to repeat to each one that she wears orthotics.  Then they will shoo you through the metal detector and either just swab her shoes (Detroit), or swab her shoes then your hands (Chicago O’Hare).  Why they had to swab my hands, I don’t know.  And then, as your three kids try to get your four kids, four laptops, one iPad, six back packs, carry ons, sets of shoes and jackets off the belt while Mom’s getting swabbed and Dad’s explaining meds, the TSA agents will then tell your kids to hurry up, get the stuff off quickly and move it elsewhere, they’re holding up the line.  To which I almost said “Lady, we ARE the line.”  But I wasn’t in the mood to be frisked, so I kept my mouth shut.  I knew we were pushing our luck as it was.

Speaking of frisked…since going through the airport, Maura has developed this odd new thing…she’ll pat me down.  Like full, hands on either side of my legs pat down.  Up and down each leg.  She did it to Josh too.  They didn’t pat her down, but she must have seen someone else getting the Special Treatment, lol!

But she’s transitioned pretty smoothly to Dublin life.  She’s enjoyed being able to play outside without a coat, climbed to the top of Dalkey Castle and back down again, scared the pigeons in St. Stephan’s Green, and was creeped out by a marionette on Grafton Street (which really wasn’t creepy, Miriam thought he was hysterical.)  We’ve heard new phrases out of her like “What happened!” and “I’m hungry!”  Yesterday, we bought a new charger for her iPad, so we can charge it easily here and she’s been overdosing on Tinker Bell this morning.  Which makes up for my cruelty at the shopping centre yesterday, when I wouldn’t buy her any new clothes.  I know, I’m cruel.

Once we have a more permanent address, we will sign her up for school someplace.  We have the option of a special school or doing inclusion at a regular school.  The special ed director we talked to here thinks Maura would be fine doing inclusion, especially if her sister’s in the same school.  So we’ll most likely do that.

And that is that.  There would have been pictures, but WordPress is being funny about them.  You can see pictures of Maura and everyone else at my Herding Cats blog – just click on the “photos” tag…or wander about the whole place.

Last night we took everyone to see “Megamind” at our $3 a seat theater (I’m going to  miss that place when we move!)  Maura loves going to the movies, partially for the popcorn.  Last night, she was in rare form, whoo-hooing it up in the car when she found out where we were going, bouncing in her seat as she at her popcorn before the show started, literally on the edge of her seat when the movie began.

But there was one point, when Megamind (who starts of the villain in the movie) is sad because of events that happened.  There he was, on screen, looking sad and downtrodden.  And Maura burst out crying for him.  It  made her sad to see him sad.

I have to laugh though at it – this totally defines who Maura is.  Maura is so innocent, she will cry for the bad guy if he’s sad.  She wants everyone to be happy, just like her.  Maura is also the girl who roots for both teams playing a sport.  She doesn’t care who scores, she just likes seeing people score and be happy about it.  Another example –  I was yelling at Miriam over shoes once again not put in the closet, and Maura burst into tears.  She was more upset over it all than Miriam.  I guess I’m not allowed to yell at Maura’s most beloved sister either.

No, Maura likes everyone in her world happy.  Herself, her sister, the characters on the big screen.  So let’s all do our best to indulge the little princess, okay?  Thanks

Last night, Josh and I took Maura to see Great Big Sea.  I think she is now truly a full-fledged groupie.

I’ve written about our musical love affair with the band.  Maura’s been a fan of theirs for most of her life, ever since she first sat down and watched their DVD at age 2 1/2.  She attended her first GBS concert at 3 1/2, her second at 5 1/2. Last night was her third time.  All three times, I’ve managed to get front row seats – you know, because she’s short.  She needs to be able to see the band!

Oddly enough, I think she knew what was happening.  Maura doesn’t always have the best memory because of her seizure disorder, but when we got to the Michigan Theater, she got very excited and determined to go in.  She’s been there only one other time – the last time we went to see GBS.  Of course, she also saw the big popcorn stand and asked for some…the girl has a serious popcorn addiction.  Which we didn’t feed last night.

Just like the past two concerts, when the band came out and started playing, she got instantly excited and slightly overwhelmed.  I think it always surprises her that everyone else in the room also loves this band and is just as excited to be there as she is.  It definitely takes her about three songs to process that the band she knows and loves from the radio and computer are now right in front of her.   Last night was no different.  She stood there, chewing on her hand, trying to process it all.  She did look a bit stunned and I guess it showed because Alan looked at me with a “She okay?” look, I responded with a “She’s good” smile and he gave us a thumbs up.

Sure enough, after the third song, she suddenly got into the swing of things.  Almost too much.  It was a sold out house full of happy people cheering and hollering, and the energy was at an all-time high – which I think fed Maura’s own energy.  Before we knew it, Maura was woo-hooing with the best of them.  Not always at the appropriate time (we apologize for her loudness during “Yankee Sailor”…at least she didn’t yell out “Freebird!”, right?)  I also think this was the first time the band has ever had someone dance their dolly on the edge of the stage.  Then again, maybe someone else has…

Maura did get into a groove during the second set. I reminded her at times she needed to be quiet and she got it.  But she was also desperate for Alan’s attention, silly little groupie that she became.  Josh noticed that whenever he’d look her way, she’d wave and yell “HIIIIIIIIII!”   She clapped, danced, and cheered all evening.  She also planted her little chin on the edge of the stage and just watched them perform.  I even got a huge hug a couple times when they played songs that were her favorites, she was so excited by it all.

Maura sang along with songs the best she could. Remember, she has apraxia, so the fact that she will try to sing along gets us parents giddy.  If she couldn’t sing along, she’d move her mouth in time (like with “Mari Mac” – which got so fast, even I could barely keep up!)   There were also a couple of songs that probably weren’t the most appropriate for her to sing along with…but who am I kidding?  The girl could drop the F-bomb as clear as day and I’d probably be excited.  But she doesn’t get the lyrics so I let it slide.  It was actually really funny when someone in the band would crack a joke – the audience would laugh and Maura would let out this huge “Ahahaha!”…even though there is no way she got the joke.

At the end of the second set, she cheered for an encore with the rest of the crowd…and was ecstatic when they came back out.  The final song they played was one of her all-time favorites – “The Old Black Rum”.  Yes, my daughter likes songs about rum.  Yes, that’s led to interesting conversations with educational professionals.  But I digress.  So there were were, singing and clapping along, song wraps up and Alan comes down to the end of the stage right up to Maura and holds out his guitar pick.  Maura – who has spent the past two and a half hours trying to get his attention – finally has the object of her affections smack in front of her.  I had assumed she’d probably launch herself onto him for a big hug if he got close enough. Instead, she suddenly became shy and ducked her head into my side.  Josh and I told her to look, he had something for her and got her to hold out her hand.  He placed the guitar pick in her hand and she said “Oooohhhh!”  in total awe of it. Josh and I giggled at how carefully she was handling it.  She allowed us to tuck it into my wallet for safe keeping.  She got a second one from one of the crew as well, after waving and saying hi to him as he came out to break down things, which was sweet of him too.

To my amazement, Maura did not instantly conk out.  She stayed awake for a good half of the ride home.  She was thoroughly passed out by the time we got home though.  And this morning she was really stinking cute.  All I saw was hair sticking out from under her blanket.  I pulled the blanket back to try to wake her up.  Party Girl Maura didn’t even open her eyes.  She said “No.” and pulled the blanket back over her head.  Eventually, we got her up and dressed for school.  While she waited for me to finish making her lunch, I caught her trying to turn on my iPod player.  I asked “Do you want music?”   She said “Yes.”    I turned on some Great Big Sea for her.  She didn’t want the first song I turned on so I asked “Which song do you want to listen to?”  She said “One Two”…so I turned to the live version of “Jack Hinks”.  Backstory – the live version is counted in.  Alan goofs and starts with the second verse, so has a re-do, including the count in.  I swear, Maura learned how to count to four because of this song.  Sure enough, it was the song she wanted and I left her dancing in front of the iPod player as I finished getting her school gear ready.  She made it to school eventually.

I know it seems weird, that we take Maura to these concerts. But she loves music, and really loves their music in particular.  Also, she’s not a typical girl, we’re not a typical family…so why do typical things?  Life has its ups and downs, and we don’t know what the future holds, so we might as well jump up and down to the music while we can!

So thank you Alan, Sean, Bob, Murray and Kris – aka Great Big Sea.  Thank you for your music and for traveling from tropical Newfoundland, Canada to Ann Arbor, Michigan.  Your songs taught Maura how to sing and give me a boost when I need it.

And now – pictures from the concert – warning, there are a few

Before the show

The Penguin (Maura insisted I take his picture too)

Maura watching the show

Alan Doyle

Sean McCann

Bob Hallett

Murray Foster

Kris MacFarlane

Great Big Sea

Alan

Sean decided to try the drums out

Maura, impressed at all the people who also like the band

Part of the problem with Maura is we never know what may work for her.  Sometimes, it’s a crap shoot, risking money on something we aren’t sure will work. So when we find something that will work, we run with it.  It’s even better when we find out something will work before investing money into it.

Case in point – the iPad.

Now, when the iPad first came out, I thought it was kinda lame.  I assumed it would be like a netbook.  They called it a tablet, and all the tablet computers I knew had keyboards.  Anyway, after realizing it was a really big iTouch, I passed it off as lame.  But then Maura’s speech therapist got one, loaded it with educational, speech producing applications and let Maura play with it.  Maura took to it instantly, loved it, and best of all, could manage it. Maura usually has a problem with manipulating things.  Her fingers are very bendy and she has motor planning issues.  But the iPad is big enough that she can mange the touch screen really well.

I’ll admit, we did check around to see if there was anything maybe a little less expensive that would do the job.  But there wasn’t.  There also weren’t any of the apps like the ones that were written for the iPad.  So this week, we went to the Apple store.  Ten minutes later, we left with the iPad and a case for it. I then spent an hour the next day finding and installing apps for it.

When Maura got home from school, I showed her what we got.  She saw the iPad and said “Wow!”  And then showed her siblings her mad touch screen skills. Some things are really easy for her.  Others are a little tricky, like tracing letters.  But she works hard at it.

Today was a great example on how we are going to utilize the iPad.  Mim wanted to audition for The Nutcracker (which I am geeked about – I hope she gets it!)  Now, Maura always wants to do what Miriam does and it can lead to very loud moments from Maura.  So today, as Mim went with the rest of the kids to audition, I pulled out the iPad.  Instead of running after Miriam, screaming her name, Maura sat down, picked out a game to play, and spent the hour doing things like matching games and spelling games.  And once she got tired of the learning games, she figured out where her Shaun the Sheep videos were and turned one on. Not one scream out of her.

Oh yes, we’re going to enjoy this.

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.

Shhh…don’t tell Maura’s teachers, but we’ve done all but nothing this summer.

Oh sure, the proverbial “They” will tell you that you are your child’s teacher, and in the case of a special needs child, you’re also their therapist, specialist, and nurse.  I get that.  I do try to live by that.  But at the same time – it is summer vacation.

Maura’s special ed teacher offered to put together a packet of stuff that we could work on over the summer.  I told her honestly that we probably wouldn’t do it.  It’s summer. We’re lazy.  We let her roam, play with toys, go swimming, go to the movies, and all those other normal kid things.  Her teacher was completely fine with that…but ended up putting a packet together for Maura because she felt bad that everyone else was getting one and Maura wasn’t.

I’ve yet to open it.  It will be used though – I plan on giving it to my mother-in-law when she watches the kids while Josh and I go on vacation sans kidlets.  Grandma is much better about getting Maura to do those things than I am.  To Maura, I’m Mom, not therapist.  I sneak in speech stuff – at this point, Maura assumes everyone works on speech with her.  It’s a given.  But other things…eh, if we do something that happens to be fine or gross motor, it’s a fluke. 

Now, the solution to this would be Extended School Year, also known as ESY.  ESY is for at-risk kids, special ed kids, so that they will continue to make progress and not lose time over a three month summer break. In the preschool years, it was six weeks out of the summer, three mornings a week, regular preschool hours.  They followed the regular schedules, with speech, OT, and PT involved. 

We don’t get that now.  Heck, they had to figure out how to make Maura qualify.  The main qualifier is regression.  If the child has a possibility of regressing over the summer, they should receive ESY.  The other qualifier is if they’re at a critical point in development.  Like they’ve suddenly got the grasp on certain things, keep it going over the summer.  This is how they had Maura qualify for ESY.  Most people (who don’t work in education) are stunned that there was even a possibility that Maura wouldn’t qualify.  Welcome to our reality.

I was then surprised to learn that ESY for elementary kids is not like ESY for preschool kids.  It is not like school.  It’s more drop-in therapy, reverting back practically to our Early Intervention days. Our ESY consists of a three day a week schedule, an hour and a half each day, for four weeks.  She’ll spend an hour with the special ed teacher during those three days, have a half an hour of OT once a week, and a half an hour of speech twice a week.  It’s not a lot, but better than a kick in the pants.

There’s one catch – we’ve scheduled our vacation for the middle of it.  Hence the packet we’re giving to Grandma.