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.

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!

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.

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!

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’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.

I found out yesterday that they’ve cut our district’s special ed budget by $30,000.  Oh joy!

Really, in a time where every Big Business and Coporation is getting handed millions and billions, our piddly little budget is getting cut?  It wasn’t that huge to begin with.  Whatever happened to “We care about education!” and “We need to help those who are unable to speak for themselves!”  This is why I hate campaigns and all the rhetoric that comes from them.  Because at the end of the day, I never see any follow-through.  Instead, I see budget cuts in areas that shouldn’t be cut at all.

We have one public school option with Maura.  We might be able to spend thousands of dollars, plus time commuting her, to take her to a private special needs kindergarten an hour away.  If they have a spot available.  But then we end up back at square one again the next year.  We’re trying to do all we can to work with the school Maura will be going to next year to set up the best situation we can for Maura. 

But we can’t get Maura all she needs without a budget.  And it’s not just Maura.  It’s the other special ed kids who I’ve come to know through Maura’s class who will also suffer.  And this will trickle down to the general ed kids as well, as the special ed kids are all mainstreamed into the regular classrooms as much as possible.  If the special ed kids don’t have the support they need, it affect the entire classroom.

So, what can one mom do?  All I can.  I asked the mayor of our small town (who also happens to own the coffee shop) who I need to pester for money for the special ed budget.  She gave me names.  Turns out one state representative will be at said coffee shop on the 20th.  I shall be there, possibly with Maura in tow as a visual aide, asking questions as to how we can add to the budget.  Let’s face it, when they say “No Child Left Behind”, that still includes MY special ed child.  And I’ll be damned if she gets left behind because we can’t get a better budget through the state or federal level.  If the feds can give billions of dollars to banks who are using some of that money for vacations or the like, surely the feds can spare a few grand to make sure our kids receive a Free Appropriate Public Education, non?