About these ads

Fun with Mainstreaming! Part 2 – the staff

17 May

This is the ninth installment of the story of our journey with Maura…

I want to pause here for a moment and talk about the school staff, the people in the trenches, those who worked with Maura on a daily basis during kindergarten.

When I think of Maura’s (second) para-professional, resource room teacher and kindergarten classroom teacher, I always smile.  These ladies were nothing less than kick-ass when it came to caring for my daughter.  If I were to start a school, I’d hire all three in a heartbeat.  They saw Maura for who she was, what her capabilities were, never held her back, and always looked out for her.  If they weren’t there, I don’t know if I would have been able to send Maura in every day.

The kindergarten teacher especially loved my stories of why we were once again late for school – and we were late enough, that at an IEP meeting, she had us explain why we’d be late a lot, and why it shouldn’t be held against us.  Sometimes, it was just so Maura could sleep in (her bus came at 7:30 am, and some mornings, she just wouldn’t wake up.)   Sometimes, I’d get Maura all set to go, go to get myself dress, only to come downstairs and find Maura had completely stripped down and I’d have to start over again (dressing Maura can be like dressing a drunk octopus.)

Once, it was a completely ridiculous scenario, where the dogs ran out, I ran out to herd dogs back into the yard, Maura ran out too, running after dogs, me trying to herd all three creatures back into the house…and discovered that Maura stepped in dog poop.  She only had one pair of shoes that went over her ankle-foot orthotics.  So I had to take off the shoes and scrub them down before sending her into the carpeted school.  I thought they’d appreciate that.  They did.

The resource room teacher was just everything you could ask for – engaging, caring, always trying out new things to help Maura learn.  She put her heart into her work and cared about every one of her students.

And yes, the aide who took care of Maura as if she was one of her own.

There was also the two speech therapists she had that year, two amazing women who worked hard to help get Maura talking more – who had also worked with my other children at various times.  I trusted them completely and yes, I’d hire them on at my fantasy school team.

There were others too – the bus driver who was also just the most trustworthy soul, I trusted her with all my kids, and I knew she’d keep a good eye on Maura on the way to and from school.  The school secretaries, who made sure Maura got her meds every day.

All these people made the impossible work.  Plus those who advise me from the sidelines – they know who they are, and they have my thanks.

I can’t even imagine how much better it would have been with the cooperation of the administration.  Because in a way, we were in an ideal situation – a small town where everyone knew Maura, who cared about her and knew her ways.  How Maura could walk into stores and people would be patient with us while I got her to use her words.  The coffee shop where she’d hand out hugs and get chocolate muffins.   My circle of friends who were always there willing to help out.  The ballet teacher who felt that of course Maura should be in class with her peers – I really miss that ballet teacher!

There was a lot of good that year.  There really was.  It’s what got me through the crazy times, and had me apologizing to all the people who had to put up with my ranting about the other things.  To them, they will always have my constant gratitude, and I will be singing their praises for the rest of time.

About these ads

Fun with Mainstreaming! Part 1 – the medical issues

17 May

This is the eighth installment of the story of our journey with Maura…

I just had this memory of the Kindergarten Readiness Night, the one where all the parents go to learn about kindergarten.  Which honestly?  With your fourth child is more than redundant.  When it’s your fourth child who has special needs?  It’s practically pointless.

I remember sitting in this meeting as they told us all how much our children would grow and learn through the year.  How by the end of the year, my child would be reading a little, writing, doing simple math.

I had the good warped sense of humor to laugh about it.

But I also went up to one of the administrators afterwards and said “Listen, as an fyi, this sort of thing could be REALLY depressing to a parent of a special needs child.”  It was all basically one big meeting of “Things My Child May Never Be Able To Do”.

And the principal looked at me, all bright eyed and optimistic, and said “Oh now you don’t know!  She may surprise you!”

Sweet Baby James woman, have you NOT read her file? – is what I did NOT say.

But this sort of attitude is what I’d get with administrators.  The people who at the end of the day, made the final decision for my child.  These unrealistic ideas of what her abilities were.  My theory is that either they were just ignorant to the severity of her disabilities – which would be understandable at first – or trying to make her more “able” on paper so they didn’t have to invest as much in her.  Let’s face it, my kid, and kids like her, are pricey.  I can sympathize with that, I’ve got the medical bills to prove it.  And you know what?  Pretending she’s not that disabled gets us no where.

Anyway, this was the situation I was heading into with kindergarten – a principal who didn’t seem to get what we were dealing with, and a special ed director who wanted to label Maura as high functioning.

A couple weeks before school began, we met with the teacher, new aide, and special ed director to go over things.  I knew the teacher, knew she was awesome.  The aide seemed nice enough.  The special ed director was…well…the usual.

Like when I asked about getting staff trained for Maura’s seizures and the medicines that came with it.  She looked at me and said in all honestly, “Oh, do you want them trained?”

Hm.  Let’s see.  They’d have to administer Valium, rectally, while she was actively seizing…..oh, what the heck, let’s wing it!

No, I didn’t say that.  I just said that yes, I would love some medical training, especially as Maura had a tendency to have a seizure at school.  (They’re few and far between, her seizures, but the majority happen to occur during school hours – go figure.)  She said she’d look into it.

But it didn’t happen before school started.  Neither did she procure the item needed for diaper changing (which ended up being one of those comfy cots you find in nurses office.)  I was told it was because it took some time to decide on the proper piece of equipment.  That finally arrived a few weeks after school started.

Of course, that didn’t matter much because lucky us, we got the aide that had an aversion to diaper changing.

Maura had qualified for this special speech therapy program, the afternoon session, so for the first three months of school, I’d pick her up at noon (kindergarten was full day at that school.)  I would pull up every day in the drop-off circle, where Maura was usually wandering about and the aide sitting on the bench texting.  It sort of bothered me, as I knew it only takes a moment of not paying attention for Maura to get into trouble – or fall off the curb.  Not to mention, she has this tendency still to take off running to meet me (her current bus aide will not let go of her until she knows I can catch her, smart woman.)   So every day, I’d pull up very slowly, stopping before I’d get too close - so on the off chance Maura fell into the driveway, I wouldn’t run her over.  Because the aide was never within instant reach of her.

Then I noticed this trend of Maura having a full diaper during hand-off.   Which is just annoying when you have an hour’s drive ahead of you.  Some days, we’d arrive to therapy and her diaper would have leaked everywhere.  Or she’d be climbing into her car seat and I’d realize she smelled bad.

The first time, I gave the benefit of the doubt.  The second time, I got annoyed.  The third time, I wrote a note to the teacher (who didn’t realize Maura wasn’t being changed – changing Maura wasn’t her job, it was the aide’s, and we had all trusted her to change Maura.)  The teacher had words with the aide.  But between that and not showing up for a meeting until the very end and without an apology, plus the fact that she wasn’t doing her job in other ways…well…they found a new aide.

How I found out Maura had a new aide was when I arrived to pick her up, and a new person was with Maura.  The new person got to tell me that she was the new aide.  I left a little bewildered and unsure – I mean, surely one would expect the school to notify the parent that their not-really-verbal special needs child suddenly has a new full-time staff member? Is it unreasonable to expect some administrator to call me up and go “By the way, we had issues with the aide, she has been replaced, this person will be tending to your child’s needs from now on.”  Is that too much to ask?

Luckily, we went from having the “meh” aide to the “I trust you completely with my baby girl” aide.  The super-amazing, spoils you for all others aide.  I’d pull up to pick Maura up and the aide would be playing games with Maura, and Maura would be clean and fresh and sometimes, have her hair done up in some fun braids even.

Besides the aide snafu, we started off kindergarten with a seizure on the second day of school.  On the playground.  Fall over flat, full on short seizure.  Honestly, part of me almost laughed when the school called to tell me Maura had a seizure on the playground, as that was the exact scenario I used to the special ed director the spring before when she was contemplating Maura share an aide.

However, having a seizure at school didn’t boost any sort of medical training up the ”urgent” list.  No, the school staff got to fly blindly with just the info I gave them (I found medical type forms online that I printed out, plus the pamphlets I made).   In October, we had another meeting with the special ed director, and again, I asked about medical training.  I was told once again that she was working on it.

It finally happened in November.  I had asked for this in May.  It took until November.  And then, it was only for three – Maura’s regular and special ed teachers, and her aide.  I was a bit flabbergasted and asked if shouldn’t there be more people there?  I was told the principal couldn’t make it as she had a previous engagement (and by the powers of a small town, I learned that it was a Boy Scout meeting.)  The special ed director assured  me that it would be a very rare day indeed that even two out of the three staff members would be out of the school on the same day.

The next Monday, the special ed director sent the special ed teacher and Maura’s aide to a conference.  Leaving just the one teacher who was trained in what to do.

Needless to say, I was not impressed with how the administration dealt with the seizure disorder issue.  I got the feeling it wasn’t taken than seriously, even with her having a seizure at school.  I knew nothing about seizures until Maura had one, and they are scary to deal with if you don’t know what to do.  I didn’t think it was fair of them to put a child like Maura into staff’s hands, expect the teachers and aide to deal with a seizure, when they hadn’t had any sort of training for it.  Let’s be honest, teachers and aides do not get paid enough as is – and now they’re supposed to be nurses too?

Then I caught wind of the fact that two other students who had medical issues had full-on medical plans, with 911 call sheets, plans on how to handle a medical emergency, who would stay with the child, who would call 911, who would do what.  All organized and multi-copied and thought out.

And yet, not even suggested to me by any administrator.

I read up on how my child should have a medical plan, and realized we didn’t have one.  Or so I thought.  Yet when I contacted the special ed director about this, she told me that we did have a medical plan – the little pamphlets I had made – and therefore, we were all in compliance of any laws.

I was a bit “What the hell?” about it all, as I didn’t consider the info pamphlets I made a “medical plan”.  But apparently, me trying to share information was considered good enough by the special ed director.   I got a bit grouchy over this and stated what I gave them was NOT a medical plan, that I wanted one for my daughter like what other students already had.

Looking back, I get even more annoyed.  My daughter spent two years in the special ed programs there, having several seizures at school, on staff who had no training, and no formal plan of action if there’d been a medical emergency.  The last year of preschool, I just stopped leaving town while Maura was at preschool, because I wanted to get there asap if she had a seizure.  Her medical issues weren’t taken as seriously as they should have been.  I know that now.  Having had a different experience with Maura’s current school, seeing how seriously everyone took her seizure issues, the principal familiarizing herself with all that they needed to know – I can now see how things weren’t done right with Maura.

Again, it wasn’t fair to the staff who worked with Maura daily, the ones who would be dealing with any seizures she had.  It wasn’t fair to me, to keep me from having more peace of mind when she was at school.  But also, it wasn’t fair to Maura.  She deserved better.

We finally had a meeting to create a medical plan in late January – five months after she’d had a grand mal seizure on the playground.

It was at this point of time I stopped playing nice.  I had tried being understanding, I tried seeing it from the other point of view, I had talked the ear off of the best friend who was a special ed teacher, to get her perspective, to see if I was blowing things out of proportion.  But I’d had enough.

I wasn’t ever rude, I don’t think so.  I just got blunt.  To the point.  Very direct.  I put out what I wanted – which again, was nothing that wasn’t within my rights, things that had done for other students, things within reason.  I didn’t ask for an verbal behavior therapist to come in and give Maura extra therapies.  I didn’t ask for a trained nurse to be staffed in the school at all times.  I didn’t ask for them to rearrange the classrooms so that it was epilepsy-safe, or had them re-do the playground so that it was full of cushions and soft landings.

You know, it’s a shame that four years later, I’m still feeling like I have to defend myself for asking for what I did ask for.  That somehow, asking for a medical plan like other students had was being “demanding”.  That I was not being understanding enough when there wasn’t any place to change Maura’s diaper for the first several weeks of school (have you tried changing a diaper with the kid standing up?  It is not a long-term solution, especially when you’re squeezing her bum into a size 7 diaper that juuuuust fits.)   I was asking for basic needs to be met, for her serious medical issue to be taken as seriously as they did all the food allergies (which I have always complied with happily – no peanut butter sandwich is worth another child’s life.)

But I know that the special ed director would probably have a different story, how she tried her hardest and we weren’t understanding enough.

Except we were only halfway through kindergarten and there was more fun to be had.

And by fun, I mean frustration.

But mama got a new pair of kick-ass boots and wasn’t afraid to use them!

Miriam and Maura, first day of school. That little face? Is the reason why I do what I do.

Miriam and Maura, first day of school. That little face? Is the reason why I do what I do.

Tags: , , ,

Dinner Texts

15 May

Long story shorter – Maura tried to baptize her iPad Sunday, after taking off parts of the Otterbox.  There was much seepage of water into the Otterbox, and the iPad kept seizing up, stuttering, refusing to swipe or acknowledge the touch screen.  In an attempt to help it dry out, I took off the handy dandy Invisible Shield, the thing that keeps the screen from getting scratched up.

After some time in ye olde bag o’ rice, plus some freezer time, some defrosting time, and then some plain old laying on a towel in the sun, today, the iPad showed it made a full recovery.  No more seizing, stuttering, and swiping worked again.

But I realized I had no Invisible Shield.  Which led to an emergency trip to the mall tonight (Ireland does NOT have an Apple store – anywhere – you have to go to Belfast for that.  But there is an “authorized Apple dealership” which has proven once again to be useless.)

After wandering the mall in search of a screen protector and realizing they had none, I also realized that I had left the house just as dinner was almost ready.

Which meant I left my children alone with said dinner.

And I didn’t specify that I’d need food too.

So I send the Eldest Boy a text -

Me – “Is there any chicken left?”

Him – “No and I’m not as sorry as I should be.”

Me – “Snot.”

Him – “:P”

You have to give the boy props for honesty.  The smart-assery comes from my side of the family, so I can’t even get too mad over that.  The smiley face was a nice touch.  And I got my revenge in the form of a Maura poop story.  Mwuahaha.

(PS – I dug around and found that I did have a spare screen protector, so the iPad is all safe and protected again.  And I did manage dinner for myself.)

 

Kindergarten Prep

15 May

This is the seventh installment of the story of our journey with Maura…

Where did I leave off?  Maura, seizures, preschool…

But eventually, even Maura got too old for preschool.  She still hadn’t mastered writing the letter M, but she was turning six, was a head taller than half her class, and couldn’t stay in preschool any longer.

Honestly, looking back, we shouldn’t have bothered with the third year of preschool.  She really didn’t make any progress, and she started dragging her feet every morning as we walked from the parking lot into the school.  I think it all kind of got boring for her, as she was still trying to meet the same goals – draw a straight line, put the bead on the string, walk up and down stairs without holding onto the railing…

It was time to move on.

And that’s when we realized that things were about to get interesting.

I remember sitting in the Special Education Director (SED)’s office, asking about kindergarten, wondering what would best suit Maura – mainstreaming or some sort of special school.

Her response was “Don’t worry, we’ll meet ALL of Maura’s needs here.”

When I asked what the options were if this didn’t work out, again, she said “Don’t worry, we’ll meet ALL of Maura’s needs here.”

Yeah, I started to worry.

We got to be part of the Guinea Pig special ed preschool class.  Lucky us, we were going to be the guinea pig special ed elementary school class as well!  I looked at how they hadn’t had a child as disabled as Maura in the elementary school, and wondered just what they were going to do with her.  I also couldn’t wrap my brain around the fact that there were NO options – the only choice was mainstreaming.

When I asked the SED about it, she got a bit defensive, saying that this would work, and I should be happy Maura was too high functioning to qualify for any of the self-contained special ed classrooms in the county district.  Eventually, I figured out that her idea of “high functioning” was every so slightly more optimistic than anyone else’s.

Then we started going over IEP stuff.  And I started to get more anxious about it all.  First, when the SED was talking about how Maura could share an aide with another special ed student going into kindergarten.  A child I knew well, a lovely child who was a runner and requiring as much attention as my own.  The thought of these two children being in separate classrooms, with one aide running between them?  It was ludicrous.  Why in heaven’s name would you do that to some poor aide?

I smelled Budget.  As in, “How cheaply can we manage these special ed kids?”

I put my foot down.   Maura needed her own aide.  Not a shared one.  Yes, it was demanding of me, but a child who was somewhat non-verbal, who had epilepsy, who couldn’t zip up her coat, who was still in diapers, who had no sense of danger and needed close supervision on the playground?  Share an aide?  No, here I put my foot down.  I insisted on her own aide – my one example was “What if she had a seizure on the playground?”

Not to mention, a shared aide’s logistics, trying to take care of two disabled kids without the power of bilocation was dizzying.

The SED relented on the aide, Maura would get a full time aide.

But then, it seemed like everything was getting a bit shorted.  Maybe it was because we still didn’t have a label, that there was no example to go by in terms of how much Maura would need.  Plus, I was supposed to have all my fears and worries eased by a program that wasn’t yet developed, with a teacher that hadn’t been hired yet, and a blueprint picture of what the proposed resource room would be like for Maura’s resource room time.

All while being fed a line of how ALL of Maura’s needs would be met.

I cracked.

I cracked spectacularly.  On the poor little preschool teacher who was just trying to be nice by saying “Don’t worry, it’ll all work out.”

I looked at her and in a slightly hysterical tone, said “No!  It’s NOT working out!”  or something like that.

She tried to say something nice (but I think I surprised her – I was not one to fall apart in public) and I actually gave her the hand.  YES!  The Hand!  With “No, I’m not talking about it here.”

Somehow, I managed to sob my way to McDonald’s to buy Maura a Happy Meal and myself something to.  Then I sniffled my way home and stuffed my mouth with French fries while Maura happily watched some cartoon.  The phone rang and the school’s number came up.

See, apparently, I was upset enough that the preschool teacher called the speech therapist who had worked with my other kids and knew me well, told her about my meltdown, and this speech therapist knew me well.  Had been through a bunch of IEP’s with me.  Had sent me off to Early Intervention with Maura.  She knew I didn’t crack under pressure.

I was slightly mortified that she called and got to hear me sob on the phone to her about how I did NOT feel good about sending Maura to kindergarten.  God bless that woman, she talked me off the ledge and said “What can we do to make you feel better?”

We went through some things on the IEP.  Minor things.  Tweaks here and there.  I calmed down about it all, but maybe cried a bit more after we got off the phone because she was just so nice and helpful.  (She is one of those people in Maura’s life who I will be singing the praises of until the cows come home…and then some…)

Maura’s IEP transitioning her into kindergarten was a bit ridiculous.  I think we had 14 people there.  Fourteen people.  For one little girl.  Who the special ed director thought was high functioning.  She also kept saying “Well, IF Maura isn’t potty trained by the time school starts…”

I put the kibosh on that.  “Let’s just plan for the fact that she will NOT be potty trained, that she WILL be in diapers.”

Yes, I had to argue over where my daughter would have her diaper changed.  The SED thought that the bathroom in the classroom wasn’t a good place.  Other students might notice then that Maura was in a diaper.  No, it was more inconspicuous for her aide to walk her through half the school to the resource room to change her diaper.  No one will notice that!  (FYI – took one whole day of school for her classmates to notice she was in a diaper.  Because kindergarteners, for all their goofy ways, are obnoxiously observant.)

There was also the matter of the school bus.  We lived in a semi-rural area, so the bus route was about an hour long.  Our house was the last morning pick up, but they’d then flip the route for the afternoons, which meant actually driving past my street to go out into the country and then back, making our house the last stop in the afternoon, meaning the afternoon ride would be an hour.

The SED took me to meet with the bus director, who showed me the harness they would put in so Maura could be seat belted in – a nice 5 point harness that she couldn’t undo.  I was great with that part.  I then asked about possibly switching the bus route slightly in the afternoon, so they could swing by my house to drop off Maura, instead of having her on the bus for an hour.  (Especially as up to that point, no one mentioned the word “aide” when it came to the bus ride – which technically, they’re supposed to provide.)

The bus director balked a little, even though doing this would not take the bus out of its way, and only changed the route times by five minutes.  They would be driving past my block anyway, all I was asking was that they’d first turn down my street, drop Maura (and my other kids, since they were there) off, then turn the corner and go back to the regularly scheduled route.  Five minutes.  Two blocks.

What the response I got was?  “Some parents may think it’s not fair that she gets two short bus rides.”

Seriously?  Not fair?  I told him that if he gets those calls, he could give those parents my phone number, I’d explain how I didn’t think it would be fair if Maura had a seizure on the bus somewhere.

He backed off.

And then I played my trump card of “I’ll be fine with not having an aide on the bus with Maura if she has the shorter ride.”

So they made that minor change to the bus route.  No parent complained.

I still hadn’t met with the district nurse about Maura’s seizures, the teachers weren’t trained in anything medical, the aide and resource room teacher weren’t hired, the resource room didn’t quite exist yet, there was no place for diaper changing, Maura still napped half the time in the afternoons,

there was no other option if all this failed…but apparently, we were ready for kindergarten in the fall.

Yes, there was no need to worry, Maura would get everything she needed.

No need to worry at all…

…well, I did still have one of the four best kids in the world.  And a new-found self confidence.  See, before Maura, I was not really what you’d call “confrontational”.  No, I teetered on the edge of “doormat” sometimes.  Then I started having children and that mama bear gene started to come alive.  I had Maura and it morphed into something more.  I came from a long line of strong stubborn women who were always polite, but also didn’t take any crap off people.  I was always impressed with them, they were the women I aspired to become.  And then one day, I realized, I’d become one of them.  Thanks to a husband who believed in me and always has my back, to the older three children who kept me on my toes, and to Maura, who trusted in me in every way, shape and form.

Oh, I was still going to worry about kindergarten – and I underestimated how crazy it would be.  I dreaded having to have more meetings over IEP’s and Maura’s issues.  But I knew I had this.  Failure was not an option.

 

 

Summer 2009 - Maura, holding Miriam's hand

Summer 2009 – Maura, with the Best Sister Ever. 

Tags: , ,

Loving the Unlovable

10 May

 

 

I read a blog post recently by another special needs mom I know.  She wrote about her child’s cheerful disposition, and how that helps shape her outlook on things.  I can relate to this – Maura is such a happy creature most of the time, and has such great reactions to things.  One Christmas, she entertained extended family with her sheer joy and excitement with every single gift, no matter how big or small.

It’s easy to be positive about life with a special needs child when they have a naturally cheerful disposition.

But something this mom wrote made me pause, and think.  And it has been weighing on my mind since reading it.

What she wrote was basically this – Because her child is cheerful in disposition, people want to be with her child, help her child when need be.

It is true, people always want to help out the nice kids, the happy kids, the easy kids.  The kids that don’t need as much of an effort from you.

Yet this truth makes me a bit sad.

Maura is an example of the type of child teachers and aides want.  First, she’s a girl, and in the world of special education, girls are the minority.  I’ve had therapists excited to finally have a girl to work with.  Maura is flexible in nature, easy to work with most days, and loves going to school.  Now, she does have moderate cognitive disabilities, which means she requires more input, guidance and supervision. She struggles with basic concepts, staying on task, cannot write, can read only things like her name, which she’s seen a thousand times.

At least she’s good natured about it.  And for that I am grateful.

She’s the child with the cheerful disposition people are happy to help.

But what about those who aren’t as cheerful?  The ones that struggle with sensory issues, who have no way to communicate?  The ones who can’t say “This bothers me.” so lash out instead to make their uncomfortableness known?  The ones who you have to chase down, who scream and flail?

The ones who people don’t really want to be around, don’t really want to help.

If you’re lucky, you get that amazingly dedicated person who sees the child you love.  The one who sees the struggles your child has and is as desperate as you are to help them through that struggle.  The one who greets all her students with the same sincere smile, because she cares about them all equally.

Maura has had a couple of these teachers.  I’ve seen them love Maura lots, and love her more difficult classmate just as much.  I’ve seen them deal with frustrated flailing children and never blame the child for acting out – instead, they say “Oh, it must have been something I did, I missed, I should have known better than to do that around them.”

It is refreshing.

I’ve also seen those who inwardly recoil from the more difficult, less cute child, or give them less attention.  I’ve seen Maura treated with less patience when she was the taller, awkward, more needy student than her smaller, more capable classmates.  And yes, it stung.

But I know that others have dealt with much worse.

I’m finding it hard to put things delicately – it’s easy to talk about being positive when you’ve had positive experiences.  When your child is the one people are bending over backwards to help out.  Because it’s easy to help them out, and then you leave with a warm fuzzy feeling for helping said child in need.

Yet in the corner is the other child – the difficult child.  The one who tantrums and throws things.  Who doesn’t like to be touched, and may be a bit smelly because they’re not toilet trained just yet, or because of chromosomal issues, looks odd or can’t move easily.

A therapist once told me how when you have a child who doesn’t talk, you find yourself not talking to them because you don’t get that input back from the child.   I’m guessing that sort of thing plays a factor here – you’re less wanting to help the more difficult child because you don’t get that positive feedback.

Except these are the children who are in desperate need of help, of positive people intervening in their lives to help them out.  They need the help too, just as much as the cheerful child.  Maybe even more so.

More than the child, their parents need more support as well.  They are the ones in the trenches, day in, day out.  They are their child’s “safe place” and sometimes bear the brunt of the frustrating day.

And they love their child, as difficult as they are.  They love their child fiercely, in a way that most of us cannot begin to imagine.  Because they know that their child is one of the ones that are harder for the general public to love, or even like.  They’ve been told that their child is just spoiled, needs beating, is being a brat.  They’re told that they are the cause of their child’s ill behaviors, that they are bad parents.  Their child is the one the teacher doesn’t want to have, the one the other parents don’t want sharing a classroom with their own child because that child might be disruptive.

Their child doesn’t make others feel good.   Their child is the one no one is rushing to help.

But I know their child is amazing.  Their child is just as deserving of my help as any other.  They deserve your help.  Their parents deserve your help as well.  Being a special needs parent is hard enough – when your child is one of the difficult ones, that makes it harder.  You can’t get out easily.  It’s very hard to find a sitter.  You can’t socialize with parents much.  Other parents may steer clear of you, thinking they’re being respectful, giving you space, when inside, you’re desperately hoping for a friendly smile and “Can I help?”

Anyone can help the cheerful child.  But those who cheerfully help the difficult child – those are the people who I really admire.

 

My shirt from Sevenly, which inspired the title of this post. Sevenly.org helps charities fundraise via some awesomely designed tees. This particular shirt helped Reece's Rainbow, a Down Syndrome adoption ministry

 

 

My shirt from Sevenly, which inspired the title of this post. Sevenly helps charities fundraise via some awesomely designed tees. This particular shirt helped Reece’s Rainbow, a Down Syndrome adoption ministry.  Check out Sevenly for a new cause every week!

Tags: , ,

School Days and Seizures

9 May

This is the sixth installment of the story of our journey with Maura…

So, Maura turned three and started preschool, as we also went from doctor to doctor trying to figure her out.

I think I’ve made things sound a bit doom and gloomy – it wasn’t.  Oh sure, I was depressed at the time (as in “therapist and bottle of Prozac, over-shopping to fill the emotional hole inside me” depressed – which is another story I’ll get to because it is important to share I think), but really, despite everything being thrown at me, I could see the bright side of things.

My daughter was pretty healthy.

My daughter was very happy.

I had three other kids who were fantastic in their own special ways.

I had a husband who loved and supported me, who loved all our kids, and who had my back always.

I had a great group of friends, and made some more new friends (yes, even through the preschool – yep, I made my own dang club, thank you – it was called “Oh, your kid is in my kid’s class?  Wanna go for coffee?” – we called it cheap therapy.  And it worked.)

And the first year of preschool, Maura had the most fabulous teacher.  Really, we were spoiled.  She was the teacher with all the experience, all the passion, all the heart, and ALL the patience.  Maura loved going to preschool, and Miriam loved Maura going to preschool because it meant she got to tag along with me to the coffee shop on her day off of kindergarten every Wednesday, where she was petted and spoiled by all my friends and shoved a chocolate muffin into her face (and hair, and clothes and seat and floor.)

Life at this time became less about the Unknown and more about Accepting.  When Maura first started Early Intervention, I would look around desperately for a child who was less able than her.  Not because I wished ill upon another child.  Not because I was playing the “Worse Off” game.  But because, I guess, I was looking for hope, proof that she wasn’t as far behind as I feared.  By preschool, I had reached a level of acceptance that most kids would be ahead of her, even in the special education world – and I was right.

At this time, her delays were becoming more significant, more visible.  But she still had those scattered skills that would make you say “How can she do THAT but not THIS?”    She took forever to learn anything it seemed.  I joked that it was like living with a very tiny Alzheimer’s patient, for you’d have to repeat things about 800 times and she still wouldn’t retain it.  I spent eight months teaching her the sign for “more” because she couldn’t say it.  By the time she could sign it, she could also say it.  Rendering the sign useless.

Yes, we went down the sign language route.  You have to.  It’s part of the “you must try everything” clause when you sign up for special needs parenting.  It doesn’t matter if your child can’t physically make the sign, or has motor planning issues that means it takes weeks for her to be able to manipulate her fingers into the correct formation – you MUST try sign language.

The kicker is when you spend all that time doing this only to have the elementary school go “Oh, we don’t have time for signs.”  <headthunk>

But that’s also another story…

Where was I?  Oh, slow learning.   Very slow learning.  And practically non-verbal.  Slightly cross-eyed and the balance of a tiny drunk.  I kid you not, Maura could be walking, then just veer off into a wall.  Or fall over.  Trip over her own feet.  She couldn’t figure out how to pedal a trike, she couldn’t sit on a swing and balance herself  – if you tried this with her, she ended up with a face full of mulch.  Now couple that with her need to try everything her siblings were doing and watch Mom have a heart attack!

We decided to try hippotherapy – which is basically occupational therapy on horseback.  I don’t know how it works.  Or why.  But we saw improvements with Maura, both OT-wise and PT-wise.  Plus a little speech.  Maura loved riding the horse (well, after her initial sheer terror of it all.)  We’d go every Friday, rain or shine, wind or snow, as it was done in an indoor arena.  I’d sit in the heated observation room, and would read or crochet or talk to a friend on the phone uninterrupted.  Ooo.  Ahh.

It was December, 2007.  Maura was four now.  We went off to hippotherapy as usual the one Friday, but with Miriam in tow for a change.  Mim had woken up that morning with a laundry list of physical complaints – what she really wanted was to not go to school.  I made the executive decision to let her have a mental health day off, and she tagged along with us to the therapy appointment.  I bundled Maura up in her snow pants, coat, hat and mittens and waved as she went off on the horse.  Miriam found something to play with, and I called a friend to chat.

The therapy session was supposed to be like 45 minutes.  Twenty minutes into the session, as I was talking to my friend on the phone, I looked up and said “Oh that’s weird, Maura’s laying down on the horse.”  I didn’t think too much of this, as they’d have Maura sit sideways or backwards on the horse.  I watched as the therapist helped Maura sit up, rubbed her back, and then the whole crew – therapist on one side, aide on another, and horse trainer leading the horse – turned around and made their way to the exit.

My Spidey-senses tingled.  “I’ll call you back…they’re bringing Maura in for some reason.”  I hung up the phone and then the therapist came in, carrying Maura.

Something was definitely wrong.

“Does Maura have a history of seizures?” she asked as Maura laid limp and greyish in her arms.

“No.”  I may have also said “Oh shit.”  Or just “shit”.  Maybe I thought it.  But whenever I remember this scene, the word “shit” is involved.

The therapist explained how all was normal and then suddenly Maura fell back and shook for five to ten seconds.  How she was glad the horse trainer (her husband) was holding the horse’s reigns, as the horse was spooked by what happened.  Their horses were unflappable, they dealt with screaming crying tantruming kids all the time.  For the horse to be spooked, well, that meant something.

Meanwhile, Maura is now limp in a chair.  Not unconscious, but not right at all. The therapist described what happened…

…and that’s when seven year old Miriam piped up.  “Oh, she did something like that last night.”

Two pairs of adult eyes turn to her.  “What?”

Matter-of-factly, Miriam says “Yeah, last night, when we went to bed, Maura fell over and shook, then her eyes popped open and she said “Oh!”.”

I may have cursed some more.  The therapist said it sounded like a seizure, and as she had more experience than me with them, I went along with it.  I hefted Maura up in my arms to go to the car.  The therapist asked if I’d call the doctor, and I said “Oh forget that, I’m going straight to the office!”

See, I had this fantastic pediatrician who was always available when something came up.  I called the office and told them that we think Maura just had a seizure.  It was noon.  It took 30 minutes to get there.  They said they could see me at 1 pm, when the office re-opened after lunch.  Cause they were awesome like that.

As I drove, I first called Josh, who was out of town on business.  I told him what happened, that we were headed to the doctor’s, I’d keep him posted.  In the meantime, he started looking for immediate flights back home.

Then I called my friend, who I’d been on the phone with when all this happened.  I explained to her what happened and how we were going to the doctor’s.  The funny part is when I finally got home, I saw the email she sent to our group of friends, and how amazed she was at how calm I sounded on the phone.  It made me laugh because I was internally freaking out, but I had two girls in the car, had to drive – I had no time to freak out just then.  But I did have time to hit McDonald’s for a large Coke, because I knew this day would need more caffeine.  As I pulled into the line, a little shout of “Yea!” emerged happily from the back seat.  Maura was awake and happy and normal looking.  Yes, I got her a happy meal.

At the doctor’s, Maura seemed normal enough.  I explained what had happened, and how Miriam said it happened the night before.  Again, two pairs of eyes focused on Mim, and I told her – the girl who was prone to exaggerating – to just tell the truth about what happened.

She repeated her story exactly.  That Maura had been sitting up, then fell over and shook, then woke back up.

The odds of that being it were lowering by the second.  The fact that the therapist called it a seizure made him take it seriously.  The fact that the horse spooked even got the doctor’s attention.  The doctor made that ‘hmmm’ noise – the one doctors do when they’re thinking.  I’d been hoping that the seizure-like thing was just a reaction to the very strong antibiotic Maura had just started.

It was decided that Maura was fine for now, but I should make an appointment with the neurologist.  The pediatrician offered to let me call from his office if I didn’t have the number.  I assured him it was fine, I had it, and I’d call from home.  Which is what I did, only to be told he was at a conference and was gone all day.  But, the neurologist proved his own brand of awesomeness by calling me two hours later from the conference, having gotten the message. After getting off the phone with him, I was reassured of Maura’s well-being and making an appointment for an EEG the next week.  I then called Josh to spread the reassurance, that he could wait until his already scheduled flight out the next morning, instead of scrambling for a flight that moment.

I still remained calm.  But Maura did sleep in my bed that night so I could watch her at every moment.  I read up on EEG’s, and how it was normal not to catch any seizure activity during a shorter one.  I prayed this was all a fluke, a one-time thing, because at the time, seizures were near the top of my “Please God, don’t let her get this!” list.  I kept an eye on her,  mentioned what had happened to the preschool and told them to keep an eye on her, and waited for the EEG.

The day of it, everything went smoothly.  Maura let the nurse mess with her hair, stick things on her head while she watched Blue’s Clues.  She played along with Blue’s Clues as the EEG did its thing.  To me, she looked normal.

So afterwards, when all the wires were taken off and most of the goo was scrubbed out of her hair, as I sat in the exam room with Maura and the nurse practitioner talking with me, I didn’t expect what happened next.  The neurologist walked in, walked straight over to Maura while saying “Well, the EEG showed she’s having seizure activity right here.” and placing his finger on a dot on Maura’s head.

I looked at him and said with complete surprise “Really?  But she always has normal test results!”

We actually did laugh over this.  For two years, they had tested her for everything, and for two years, her tests were all normal.  I was now in new territory.

The doctor explained that between the one definite and one possible seizure, plus the seizure activity, Maura would need to be on medication.  If she went a full year without a seizure, we’d wean her off.  We were to come back in six weeks to see how things were going, and then he was gone.  The nurse practitioner started giving me supplies – a book to read about childhood seizures, regular medicine to tie me over until I got the prescription, the emergency medication, a case to hold said emergency medication that I would need to carry around at all times.

My first thought was “I’m going to need a bigger purse.”

Then she explained how the “epi pen for seizures” wasn’t really a needle…it was gel administered rectally.  And there was a dvd to watch on how to administer it.

And I thought “Oh, forget this!”

But, there was a novelty to having something with Maura that had a name, that people recognized, that I could do something about to inform others of it.  I went and made a pamphlet on what to do in case of seizure for the classroom, and shared it with the adjoining preschool program that Maura’s class shared a building with.  I read the entire book on childhood seizures.  I ordered a medical alert bracelet.  I spent too much money on a bigger purse. I prayed for the best, and kept one eye on Maura at all times.

About two weeks after we started her new medication, I said to Josh “I think Maura’s talking more.”  She had demanded milk in her cereal.  This had never happened before.

Then her teacher reported that Maura could pedal a trike and sit on the swing unaided.  She also, for the first time in 18 months, went over and got her schedule when asked the first time.  The teacher agreed that Maura seemed to be using more words.

I looked up the area of the brain that corresponded with the dot on Maura’s head that the doctor had pointed to.  The area?  Memory and motor planning.

Suddenly things began to make sense.

We went back to the doctor for the six week check-up.  The nurse practitioner was surprised when Maura said hi back to her.  I told them how Maura suddenly made leaps in her development, ones even they could see.  They were impressed.

What should have been the worst thing in the world turned out to be a blessing in disguise.  Oh sure, it would have been better if Maura never had the seizures at all.  But we had at least one answer, and one solution.

I take what I can get.

Maura, age four

Maura, age four

Tags: , ,

Meet the Parents

8 May

This is the fifth installment of the story of our journey with Maura…

When Maura was about to turn three, it was announced that she would age out of the Early Intervention program, and considering what we knew to be significant global delays, we were suggested that we sign Maura up for a special education preschool program.

I’ll admit, I’ve never been too keen on preschool.  One of my kids never even went.  It just seemed…optional to me. The two who went to preschool were comfortably in age 4 when I sent them.  And could talk, thereby tell me all sorts of things about their day.

The idea of sending Maura off to preschool so young was a bit concerning.  Made even moreso by the fact that we weren’t sure where she’d go.  We were living in a small town and at that point, the special ed preschoolers were bussed up to the next town.  Only one day, someone realized that the majority of the kids in the other town’s class were from our town.  So a local program was starting.  My child got to be part of the Guinea Pig Class.

I wasn’t certain about it all, but knew this was probably in Maura’s best interest, so went off to the parent information meeting.  There were only six kids in Maura’s class, so it was quite the intimate meeting.  By the end of it, I was a little stunned – not from what the program director told us, but by other parents’ reactions.  So emotional.  So forceful.  So opinionated.

I had been told once or twice how I was such a “laid back” parent.  I used to get offended by that – I mean, I cared!  I had concerns!  That night, I understood what they meant.  I was laid back compared to others.  Maybe not laid back – I just didn’t go in there with both fists up and ready for a fight, looking for things to make negative comments over.

I can understand why the other parents were upset – their children were in the other program, it was a good program, and the unknown is scary.

But…

wow…

Still, I found myself getting excited by preschool starting.  Completely nervous, not sure what I’d do with myself without Maura.  I mean, I’d spent the past three years taking this girl everywhere with me, half the time on my hip.  It would be weird to not have her there with me.  But I was excited about meeting other moms of special needs kids.  I imagined we must have so much in common.

Yeah…

not quite…

That year, I learned that your child could have special needs, but if it’s not the right special need, you’re shunned from certain circles.

I’m a nice gal.  Really.  I’m pretty friendly, open to new people, and always ALWAYS try to see things from the other person’s point of view.  I walked into the preschool with a “Wow, we have SO MUCH in common!” attitude.  I was greeted with “Sorry, your kid’s not like ours, we have no time for you.”

It wasn’t all in my head.  When Mom 1 said to Mom 2 “Do you have the special needs directory?” and Mom 2 said no, Mom 1 explained how it was a directory of doctors, dentists, specialists who worked with special needs kids.

I said “Oh wow, I could use something like that!”

Mom 1 gave me a pointed look, then turned to Mom 2 and said “I’ll make sure I get you a copy.”

I got the message.  Or at least, I thought I did.  Apparently they thought that message wasn’t completely clear to me.

I don’t remember how the conversation started, or what it was about.  I just remember the one mom turning to me and stating “You’re lucky!  Your child doesn’t have autism!”

Yes, somehow I had found myself in a contest of “Who’s got it worse?”, and honestly, I didn’t want to be the winner.  But really?  REALLY?  Somehow I was luckier because my kid didn’t share a label with theirs?  I don’t think I responded.  My mind was blown.

At that point, I gave up.  I was not going to be bosom buddies with these ladies.  I realized that just because two people each parent a special needs child doesn’t instantly bond them.

You can have a special needs child and still be a jerk.

I look back at it now and kind of laugh – because at last check, I was the ultimate winner of that “worse-off” contest.  My child may not have autism, but she has not progressed as much as their children have.  And we got the added bonus of seizures!  Woohoo!

Eventually, we all simmered down and made peace.  But it was definitely a lesson to me.  Not every special needs mom is gracious and helpful and open-armed.  Those who should be the first to help a fellow special needs mom out are sometimes the first to walk right past them.  Sometimes they are so caught up in their own child’s label, they get a very narrow point of view with which they judge all special needs families by.  The ironic part is when they go around preaching how their child is in so many ways, no different from any other child – and then are the first to exclude you because your child doesn’t have the same diagnosis.

It was funny – when we moved here to Ireland, Maura started going to a special school.  We didn’t have to provide the right diagnosis. It was open to any child with moderate intellectual disabilities.   The parents here weren’t all about their child’s specific label – they’ve been about their child and their schoolmates.  I found a community of special needs families that are there to help and support one another, not a handful of people fending for themselves and fighting alone for what their child needs.  It has shown me how a great special needs community can be like.  It’s been refreshing.

I don’t think I’ve ever felt as alone with Maura’s issues as I did that first year of preschool, which was a shame.  It was a place where I should have stepped in and been welcomed as a friend.  Instead, it was a bit like junior high and I wasn’t wearing the right name brands.

But as with everything else, I learned from it.  It’s why I am always willing to help out a fellow special needs parent, or at least give it a try.  No one should be made to feel like they don’t belong, especially when they’ve been thrust into the world of special needs.  I mean, if we can’t help each other out, then what good are we?

Maura, all ready for preschool.

Maura, all ready for preschool.

Tags: , ,

← Older Entries

Follow

Get every new post delivered to your Inbox.

Join 678 other followers

%d bloggers like this: