I know, I’m a horrible person for feeling this way, and may make myself unpopular with people for stating this. I don’t blame the word, or the condition, or the kids who have it. But hear me out and maybe you’ll forgive me for feeling this way.

It first started when Maura started preschool. She was placed in a special ed preschool, and my thoughts on it were “Great! I can meet more parents who are in the same boat as us, and we’ll have so much to chat about.” I mean, I already had other friends who were parents of great little beings who were deemed “normal”, obviously I would be able to make friends easily with parents who knew what life was like with a great little being who was also a bit special.

Oh, the naivety of it all.

I was stunned by how not accepted I was. See, a few had formed their own club, their “My kid has autism” club. And I was not allowed to join. They asked if Maura had autism, I said no. They said “Are you sure?” I said “Oh, we went to this doctor at the Big Deal Hospital and they told us that Maura definitely doesn’t have autism.” The one response was given to me with a smirk and “Oh, they told us that to, but they were wrong.” The “and you could be too.” was implied. They would share information with other parents of kids with autism, information I could have used as well, but wouldn’t share it with me.

I viewed us all as people who may not be in the exact same boat, but we were on the same lake and had lots in common. They saw me as “the one whose child doesn’t have autism”. They would go on about their child’s issues, and if I said “oh yeah, we go through that”, it wasn’t the same. I guess because I didn’t bitch and moan about how tough life was.

Now I know what some of you may be thinking – “Oh, you just read them wrong!” or “You must be exaggerating!”

I could buy that, if it weren’t for the fact that one of those parents looked me in the eye and said words I will never forget.

“You’re lucky. You’re child doesn’t have autism.”

Say what?

The ironic part of that statement was that at that exact point in time, if a doctor said to us “I hate to break it to you, but Maura has autism.” I would have kissed the doctor and have been thrilled. At that point, we had spent two years testing her for different syndromes and diseases. I was desperate for a label. I would have been glad to have heard she was autistic. And I thought they were the lucky ones – they knew what was causing their kid’s issues. We didn’t know and knew we may never know.

A year later, I sat in the school psychologist’s office and was told my son had mild Asperger’s. My response was a bland “Okay.” He looked at me quizzically and must have assumed I was in shock, because he then said “Well, how do you feel about it?”

I told him, “You have to understand – my daughter? We’ve spent the past few years trying to find out what she has. Anything that comes with a book and a support group, I’m okay with.” Besides, I already knew the boy was quirky. We just had a name for that quirkiness now.

Ironically, my son’s diagnosis of mild Asperger’s suddenly gained me respect in certain circles. When people would give me the “Are you sure she’s not autistic?”, I could say “Well, my son’s an Aspie.” and suddenly, I was in the know, one of them, the card carrying member of the club. Which I thought was a bit ridiculous because his Aspie-ness was no big deal. Oh, it’s given us interesting moments, like the time he corrected the priest in the middle of Confirmation, but in a big family full of quirky people, he’s kinda normal. And having watched friends whose kids have more challenging versions of autism, I know that what we go through isn’t that major or life-interrupting.

Interestingly enough, Maura has more in common with the kids with autism we know than the son who is actually on the spectrum. Maura has apraxia – a speech disorder that is common in kids with autism. She has sensory issues as well, though hers are sensory seeking, rather than sensory avoiding. She can scream in public over a minor issue just as well as her autistic counterpart, as well as has poor sense of danger. Thirty percent of children with autism can develop a seizure disorder – Maura already has one. Many autism therapies work for Maura as well, and many of the apps for her iPad were created for kids with autism.

Here’s the catch – many times, we don’t qualify for things…because to qualify, you have to have a diagnosis of autism.

Yeah, I have to admit, that brings up the old bitterness. “Oh, we train guide dogs!…for kids with autism, go away.” “We’re a special school that has lots of occupational and speech therapy!…for kids with autism, so sorry, you don’t qualify.” “We’re giving away iPad stuff!…for kids with autism, so you can’t enter.” “We’re fighting to get insurances to cover therapies!…for kids with autism. You still have to suck it up and pay for stuff.”

I get it. I have just one child with her own little Sherlock Syndrome, and there are lots and lots of kids with autism. I’m not saying those kids shouldn’t get help. I’m glad there is all that out there, because it helps dear friends of mine. I just wish that they would be more welcoming to those of us who may not have autism, or any other label actually.

Imagine having to slog through the world of Special Needs with no help or guidance or handy guide to places suited for you child, having to do all the footwork yourself, reading up on sites on the internet, asking around, wondering if you can accost the stranger in the grocery store whose child reminds you of your own in hopes they want to befriend you and be a cohort. Imagine coming across something that sounds perfect for your child only to then read “But this is only for kids with X.”

Imagine being told you’re lucky that your child doesn’t have X, when in fact, what your child has is actually more disabling than what their child has, only it’s not visible yet.

Now imagine not twitching a little when you hear X.

For me X = Autism.

And that’s where I’m coming from.

If you work with special needs kids, input given nicely is welcomed.  Blind interference is not.  Do not come up to me while my child is having a fit and try to help when you’ve never met us. I’m actually quite capable of handling my child, I have loads of practice.  You have no clue what you’re stepping into and actually just making the situation worse.

If you have a special needs child, then you should be more sensitive to each individual situation.  Do not judge my child by your situation.  I don’t judge yours by ours.  Because they are different.  Also, this is not a competition.  If you want to compete, I’ll let you win.  Because I don’t want to win the “Who has it worse?” game.

To other parents – teach your children how to be kind to those who are different.  This may mean you have to change your attitude towards my child.  Because if you see my child as a little weird, your children will pick up on that and imitate that.

To teachers and principals – keep us special ed parents in the loop.  Some of us have children who can’t tell us what happened in school.  I should not have to find out about the bullying going on from my older child.  It breaks my heart that children who can’t defend themselves are being picked on, especially after having my older child sign all these “anti-bullying” pacts and sit through “anti-bullying” rallies.  My ten year old should not have to hear from friends how her little sister is being called a baby by other students.  It not only hurt her feelings, but made her angry.  And I couldn’t tell her “Oh, don’t worry, they’re taking care of it at school.  It won’t happen again.”  Because it did happen again.  Right in front of me.  And it’s happening to other students.  And it just makes me both angry and sad.  I was a child who was bullied, but at least I could defend myself.  My child doesn’t have that ability, and her sister shouldn’t have to step in for her.

Dear government – if you force us to mainstream our moderately disabled children, then for God’s sake, give more funding to the schools who have to deal with them.  Because many schools are not prepared for moderately disabled kids.  They have to hire extra staff, get items that are not readily available in the school, sometimes build additions.  You insisted on making Least Restrictive Environment a law, local districts shouldn’t have to pay the price for your decision.  You should.  Local districts shouldn’t have to choose between cutting something like art or shortchanging the special ed kids.

To all the teachers, aides, and therapists – Having a special needs child makes you a little insane.  It might be the lack of sleep, the stress, the worry, or our child’s current repetitive behavior. We’re just trying to do what’s best for our child, and many times we hear “You have to fight!  They’re the enemy!  You have to be a warrior!”  And we buy into it.  Thank you for putting up with us when we’re crazy.  And I say this as one who admitted to turning into “That Parent” at one point.  What you don’t always see is how when we’re in the privacy of our own homes, how we may burst into tears because we just don’t know what’s going to happen to our child.  That we’re somehow failing our child.  And we’re embarrassed when we are caught in our weak moments.  We don’t mean to be crazy – it just ends up that way.

Dear Doctors and medical staff – please understand that we may be crazy at times, but we’re also the expert on our child.  All we ask is that we’re taken seriously, or at least at face value.  Do not brush us off.  You have no clue what we sacrifice to afford to see you.  And in an emergency room situation, for God’s sake, listen to us when we say “My child doesn’t understand.”  That’s not some secret code for “Please, talk to my child like they’re a competent 24 year old.”  It means “My child does not understand and is going to freak the shit out on you when you start poking them with needles.”  And if we tell you “My child’s going to freak the shit out when you pull out the needles and flail a lot” – don’t think I’m exaggerating.  Get that extra person to help hold them down.  And for the Love of All that is Holy – do NOT criticize us for not holding our child down well enough.  It is mentally painful for us parents to have to hold that child down when we know they’re going to be caused pain.  Our child will look at us and wonder why we’re letting you cause them pain and not understand.  Sorry if I’m not perfect at it.  That’s really your job.

And to the teachers, therapists and school staff who have gone the extra mile for us, the store clerks who have dealt with us with patience and a smile, the other parents who have commiserated with us, listened to us, invited our child over to play, the doctors who have listened to us, the children who have treated our child as a friend, to those with a kind word or smile – thank you isn’t enough.  We are grateful for every kindness, every effort, every time our child and family is treated as normal and feel blessed to have people like you in our lives.

Love,

the crazy lady with the special needs kid

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 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…

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.

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!

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.

Sort of.

Yes, all the blood work and urine tests are back from the Cleveland Clinic, and they all fell within the normal range.  Though the genetics test did state that Maura had some “small missing or extra pieces of DNA” that were “benign polymorphisms”, meaning they don’t cause her medical/neurological/physical issues.

Say what?

I’m still trying to wrap my brain around this one.  How can she have small missing or extra pieces of DNA and that not cause any issue?  Really, to me, it’s medical speak to “we have no fricken clue”.  But that’s just my “I don’t even play a doctor on tv” theory.

It’s frustrating and a bit disappointing that we took the time and effort to go there and that we have absolutely nothing to show for it except Maura’s new fear of doctors (seriously, we had to go to the pediatrician yesterday because she has an ear infection, and Maura spent the entire time nervous – and usually, she’s great about them listening to her lungs and checking her ears.)  But as a dear friend of mind reminded me, at least we can say we did this, checked this one off our list of things to do with Maura.  And she’s right.  If we hadn’t gone, I’d wonder if we should have.

So that’s that, as I predicted, all tests are normal, and we still have no answers as to what causes Maura’s issues.  Maybe one of the doctors we meet in Ireland will have a clue

So tomorrow, she and I head to Cleveland on an overnight trip to see a doctor that specializes in neurogenetics and neurometabolism.  I won’t even pretend to know what exactly that means.  But we’ve tried a neurologst.  We’ve tried a geneticist.  Neither were able to diagnose her (though they are both fabulous doctors who I would glowingly recommend.)  We’re upping our game here I guess, going to a place that deals more with rare cases.

I don’t expect answers.  That’s not a negative remark, just a realistic one.  Maura’s had countless tests run, out of them all, only one came back positive for something (the EEG.)  The odds are against us for a positive test result. Then again, we may have hit the point where we’ve ruled out so much that this new doctor will be able to narrow things down even more to some rare syndrome or disorder.  It would be nice to have a name to give whatever is going on with Maura.  Saying “I don’t know” to people’s question of “What does she have?” sounds lame, even to me.  If this trip doesn’t give us results, I’ve decided to start telling people she has Sherlock’s Syndrome – aka, it’s a mystery.

I will admit, the lack of wondrous Apple customer service I received bugged me, and yes, I told people about it.  Especially ones considered buying an iPad.  “Get a screen protector!” I’d warn, and then tell them why.

Yesterday, after Thanksgiving dinner, my mom was talking about possibly getting an iPhone as my brother surfed on his Macbook.  I said how I was still miffed with Apple over the iPad, and once again told my story.  My brother was surprised that the iPad wasn’t fixed and talked about how Apple replaced his Macbook’s screen when he busted it, no problems.  I wondered about calling the customer service line directly – something that was suggested to me in the previous weeks, but I will admit, I blew off because I was told my problem wasn’t covered under the extended warranty we’d purchased.

So today, I decided “What the heck, can’t hurt.” and called the Apple customer service line.

I will say – they redeemed themselves.

After being tortured with Hall and Oates (seriously?  You get The Beatles on iTunes finally and I have to listen to Hall and Oates?), I get a customer service rep, a nice young man who waited five minutes while I calmed a very blood-curdling-screaming Maura down after the little dog stole garlic bread from her.  After we could both hear again, I explained to the rep how we bought it, we asked about screen protectors, were told they weren’t necessary, it got scratched, it was probably caused by Maura’s medical alert bracelet (aka, the metal around her wrist), I brought it to the store, told there was nothing to be done…and then how when I told this to my brother, he was surprised and so I decided to ask again.

The rep took this all in, asked a couple questions, and decided that they would replace the screen for me at no charge this one time because they wanted me to be a happy iPad owner.

And now, I am a happy iPad owner.

Oh, I will still be warning others to get the screen protectors, especially if you wear a metal medical alert bracelet. And if you have a problem with your Apple product, call the customer service line versus going to the store first.  But they have redeemed themselves in customer service.  I just hope the first guy I went to at the store isn’t the one who will be helping me when I take the iPad in!