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…

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!

Tomorrow, Maura starts ESY (extended school year…sorta…).  And it just hit me that there are two problems.

The first one – they scheduled Miss Sleeps Alot for the 8:30 am slot.  Um…this should be interesting, as she’s been taking full advantage of the summer to sleep in every morning.  Hope they don’t mind her showing up in her jammies with bedhead and a bowl of cereal.

The second one – I don’t think anyone’s taking into consideration that Maura has a seizure disorder, plus isn’t potty trained.  Oh, the special ed teacher knows that, and can deal with that.  It’s when she passes Maura off to whatever speech and occupational therapist they’ve lined up that it will be a problem.  If the ST is who I think it is, she has no training for Maura.  They never did tell me who the OT was going to be – it could be her sweet and awesome one from preschool or a total stranger. 

But the deal is this – they’re not trained to handle Maura in case of emergency.  There is no plan of action in case of emergency. 

Sure, it’s only an hour and a half, three days a week, for four weeks.  And Maura will miss out on about half of that.  But that’s not the point.  During the school year, Maura has an aide, trained and ready to go in case of anything.  Maura’s aide took her to therapies, hung out there.  There was someone right there.  I knew what the plan was.  Now?  No plan.  Let’s just wing it with the kid with the seizure disorder…once again…sigh…

So the plan of action – I get to sit my fanny in on every session she goes to.  Wow!  That’s exactly how I wanted to spend my weekday mornings!  Yes, I am being sarcastic!  I have so much stuff that needs to be done this week, it really would have been nice to have been able to drop Maura off and come back later.  Dang it all. 

Now if you’ll excuse me, I have to go plan a summer school backpack for Maura – extra set of clothes, diapers, wipes, tube full of Valium that’s inserted rectally in case of major seizure, medical plans, information sheets – you know, the usual!

There’s that saying – it takes a village to raise a child.  I never bought into that theory.  Maybe a few people, but a whole village?  But any mom of a special needs child realizes quickly that the child that needs a village is their child.

The problem though is that the residents of the village come and go.  You meet people, they work with your child, you  bond, and then they leave for whatever reason. The first time it happened was traumatizing to me.  I can admit it.  Maura’s first OT and PT were reassigned. When I came home after finding out, I cried.  Josh was very nice – he said “It’s like losing friends.”  It was.  And then I learned that not every therapist was made the same.  Our new OT was wonderful.  The new PT was…well…Maura never really got along with her.  And then we had to move on from our Early Intervention people, met preschool people, but those changed after the first year.  There was the hippo therapist, who was there when Maura had her first seizure.  We loved her, but she had to retired because of medical issues.  There were the two therapists at the Kaufman Center, plus all the other ladies there, who we spent every day with five days a week for three months straight and then no more. Starting kindergarten meant a whole new set of people to leave behind.  This year’s person is our beloved Miss A, a truly gifted special ed teacher, who was laid off due to budget cuts and lack of tenure (along with several other great teachers in our district – thanks a lot State of Michigan and your lack of funds!)  And Mrs. M – who was the speech therapist for all four of my kids – is retiring. 

Coming and going – that’s the consistancy of our world.  People come into our lives, most make a difference, and then we have to say goodbye.  You get used to it, but it doesn’t mean you like it.

Life with Maura is a constant rollercoaster of emotions.  One day up, one day down, one day nauseated.  Today is one of those stomach-turning days, with some ups involved.

The fabulous news – I think Maura can read.  Yes, READ!  Her beloved resource room (aka special ed) teacher Miss A. has been working on very simple early reading skills and word puzzles.  Maura knows the sounds each letter makes, so Miss A. thought “What the heck.”   She gets that Maura doesn’t follow developmental charts or guides, she skips around and does her own thing. 

Well, yesterday at our private speech therapy, the therapist pulled out her new iPad and was trying different speech and language programs with Maura.  One had four pictures (like dog, cat, bee, cow) and the word of the one to find was at the bottom.  It would say “Find the cow” and Maura would touch the cow.  After doing a few, the therapist said “Let’s try something.” and turned off the voice prompt.  The next word to find was “bee”.   The therapist pointed to the word, Maura looked at it, then touched the bee.  She did this again with the next one, which was cat.  She got dog and cow on the second try, then we lost her interest as Maura got into playing with the touchscreen.

Okay, it could all be a fluke.  But I really don’t think so because I  know Miss A. has been working on these things.  I can’t tell you how geeked I am about this.  I’ll admit, I thought the iPad was a bit lame when it came out.  As a media device, I still think that.  But as something that might help my daughter read?  Whole new viewpoint!

Now this is where that rollercoaster ride takes me from the top of the hill slamming down into a spiral.  I went into the school this morning and told her teachers this, only to hear that Miss A. may still be getting laid off, despite all the proper things passing.  There’s been budget cuts, and since she doesn’t have any tenure, she made the short list when lay-offs were discussed. 

Oh, I’ve been assured that no matter what, Maura will still receive the same quality of services, just from someone else already in the district, but honestly, I’m not buying it.  I think it’s a dirty trick to hire someone as amazing and wonderful as Miss A. only to cut her after a year.  I know, budgets get cut, things have to be trimmed, people lose their jobs.  But why does it have to be this teacher?  Why is it the one making such a difference in my child’s life?  I know my daughter is a drain on the school’s budget, but they want us there so they need to do all they can for her, not just made do and get by wit the least amount of strain on that budget.  Do that, or send us elsewhere.  But don’t waste our time.

So it’s a day of being amazed by my daughter’s possible new skill and yet feeling let down by the school district.   Hopefully Miss A. will be kept on next year.  Otherwise, they are going to get a call from a very unhappy parent!

Well, unless you really need them.

One day a few weeks ago, the special ed director said something that struck me as funny.  She was talking about how sometimes, Maura’s daily schedule might change because of things like assemblies at school, and how Maura wouldn’t want to miss out on an assembly.

My retort was “Really, I’m not sure Maura would realize she was missing out on anything.  And it would depend on the assembly.  Let’s face it, she doesn’t need to go to an assembly about saying “No!” to drugs.  She DOES take drugs!  We love how drugs affect her!”

Yes, another warped point of view from the weird world of the special needs parent. Yea Drugs!

Lately my life has been a series of phone calls and emails back and forth to Maura’s staff and the special ed director.

Before I get any further, I must publically state that Maura’s teachers, aide, and others at the school have been wonderful.  Also, I don’t like telling tales on people who make decisions for my child, but sometimes, you just get so frustrated, you have to let it out.

Our big problem was that due to a series of unforseen events, Maura’s therapies have not been what they should be.  And the options given to us have not been acceptable.  I sat in a whole meeting saying “this is unacceptable” while going through the options.

For example – one option for Maura’s speech therapy was twice on Mondays, twice on Wednesdays.  Um…while that technically covered the requirements of the IEP, it was quite frankly a sucky option.  This is what we’ve been running into – sucky options.  We’ve also dealt with bare minimums and basic plans. 

We’ve been told multiple times to get a lawyer.  We’ve been told that our district isn’t equipped to handle a child like Maura, who needs so much more.  School budgets are getting cut more and more.  I’ve been told that these budget cuts won’t affect Maura’s services, but let’s be honest.  This came from the same mouth that told me Maura would get everything she needed, and that was a lie. 

Now IEP time is upon us.  We are girding our proverbial loins in preparation.  I have two books to read up on the laws and rights of special ed.  I know what I want for Maura and I’m not afraid to ask for it.  We have always tried to work with the school.  We have always given them the benefit of the doubt.  We don’t go in threatening to sue them if they don’t give us the sun, moon and stars.  We are always conscious of the fact that our child is not the only child in that school.  In return, we have been taken advantage of.  Maura has missed out on a lot of her therapies.  So now, we play hardball. 

Now, this is where other people say “Why don’t you move?”  LIke in somehow moving, these problems would disappear.  Newsflash – things like this happen everywhere.  Our district is actually pretty darn good compared to most I’ve heard of in talking to other parents.  There also is no other school right now for Maura to go to.  For all of their bragging about how great their town is, and despite having the Great and Powerful University of Michigan Health Care System, Ann Arbor has no school appropriate for a child like Maura.  Not even a therapy center. 

So we try to make this work.  Despite all the therapy issues, Maura has thrived.  She’s had great people working with her this year on a daily basis – her teachers and her aide have all gone above and beyond.  And Maura has loved school this year.  That’s why she’s still there.  We just have to ensure she gets all she needs now.

Maura is entering a new phase in life – potty training.  So far, no results.  But that’s to be expected.  This is not going to be an overnight process.

However, language-wise, she is still making great progress.  It’s hilarious sometimes, what comes out of her mouth.  The other day, I called for her to come downstairs and she responded with “I’m coming Mama!”  Last weekend, we went to an indoor waterpark resort, and Saturday morning, we asked her what she wanted to do that day.  First, she said Blue’s Clues.  I asked her if she wanted to go play in the water and she did her “Hmmm” with finger on lips and said “First water, then Blue’s Clues!”  Granted, it came out “Firh wa-er, den Boo Boo.” But it was a plan of action for the day. 

She’s also figured out that when she has to say “sorry”, it’s because she’s done something wrong.  And doing something wrong makes her sad.  So when you tell her “Can you say sorry?”, she gets all sad and says “sowwy” in a pathetic little voice and sometimes even cries.  It’s cute and sad at the same time.

School is going well.  She’s learning most of her letters now and numbers as well…though she did learn how to count to ten in Spanish thanks to Dora the Explorer.  She’s also still taking dance, and her class will be rainbows in the recital!  I can’t wait because Maura picked out a rainbow bathing suit last week for our waterpark excursion, so she’s going to adore the ballet costume!   She still loves her penguins and riding the bus and is fascinated by our new little dog Cody.  She likes to take charge of his leash.  Cody is a Yorkie, so he won’t ever be able to drag her, lol! 

So life is good for Maura. Progress is being made all the time, which is all we hope for.  And yes, she’s still the happiest child ever with an ever-growing fan club!

Last month, Maura’s teacher Mrs. B. said to me “You know, I think we could get Maura potty trained.” Her aide Miss K. was also very positive about this idea. 

My response was “If you can manage this, I will give you cash out of my own wallet.” 

Yes, Maura is 6 1/2 and not potty trained.  Why?  Because we’re lazy horrible parents, that’s why!  No, it’s not because we’re lazy, it’s not because we have no clue how to potty train a child like others seem to think.  It’s just that we’ve had to wait for Maura to reach a level of maturity and fine motor skills.  We’ve tried a couple times in the past to see if she could get the concept, but it was a no go.  And when I say no-go, I mean, nothing happened. 

Mrs. B and Miss K feel that if we all work together, we can get this done.  I agree.  Months at the Kaufman Center showed me that children can be at all different ability levels and still manage to get trained (though in our defense, none of them had the fine motor finger issues like Maura’s dealt with.)  But I’m going to be realistic.  I don’t think Maura’s going to be one of those kids who is trained in two days or a week. I am embracing the fact that this will probably take months.  If she does it quickly, I will be thrilled.  But I won’t set myself up for disappointment if it takes a lot longer.  We all got the one book recommended by the AVB director at the Kaufman Center, we’re all reading it, taking notes, rearranging Maura’s schedule so we can fit in more potty time.

Here’s the big catch – Maura, despite sitting on the toilet several times a day – has never done either number in the toilet.  Ever.  She can do the whole routine except for the main event.  How we can get this concept into her brain is what may take a long time. 

I have this theory – potty training is the seventh circle of Hell.  It’s a special place where very bad people spend eternity potty training stubborn three year olds.  Anyone who has potty trained a child will agree with me (and those of you who say “Oh, but it was so easy for us!”, you can just be quiet, thank you.)  I’m hoping that this time around, with all the help I’m getting from the school, it will be a lot easier.  Meanwhile, I’m stocking up on paper towels and patience.

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

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

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

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

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

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

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

4. Squeeze various size sponges in water, bathtub.

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

5. Squeeze out wash cloth in bathtub.

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

6. Twist open containers that are lightly screwed on.

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

7. Rip up newspapers into shreds.

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

8. String big beads or buttons.

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

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

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

and now…for my personal favorite…

10.  Push thumb tacks into a board.

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

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

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