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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!

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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

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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.

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Shouldn’t we be outraged?

6 May

From the time our children are little, we teach them how to look after others who are smaller, weaker, less capable.

“Be nice to your little sister.”

“Help Grandma carry that.”

“Don’t make fun of that child, he can’t help how he is.”

We try to teach our children to be kinder, more caring people.  “Stand up for the girl being picked on at school.  Don’t be the bully, be the friend.”  Our schools even teach this.

We try to teach our children to be accepting of others, no matter what they look like or what their family is like.

We do all this because presumably, our parents did the same.  I was taught to look out for others, to be polite, to not be a mean girl, to give elderly people my seat on the train.  I was taught, through stories from my grandparents, to not let people walk over me just because there’s something about me they don’t like, to not accept being treated like a lesser person, to stand up and do what’s right.

I guess that’s part of why I blog about special needs.  Because someone has to say these things.  Someone has to be honest.

So this is me being honest.

Why aren’t more people outraged with how our special ed students are treated?

Here are kids, who aren’t always able to speak up for themselves, who have already been given a tough start in life, and they enter our public school system only to be handed yet another short stick.  They are consistently pigeon-holed, put in a corner, short-changed.  The staff in charge of them are given too much to do with not enough resources.  They’re expected to manage medically needy children with no training.  They put their hearts and souls into these kids only to be told they can’t really help them the way they need.  And the parents are told “tough luck, that’s how it works here” when they ask why.   If they push, they’re labeled “difficult” and are suddenly pariahs.  Why?  For trying to do what’s right for their child, like any other good parent.

Did you know that to be an aide to a special education child, by law, you only need a high school diploma?  To be a para-professional, you only need two years of college – in ANY subject.  So the person who is in charge of the special ed student all day is the person with the least amount of training sometimes.  Sometimes you luck out and get the person who has her degree in special education, and you thank God daily for her.

You aren’t allowed really to discuss things with the staff, not in many places.  They don’t want “parental interference”.  They take these children, who are such square pegs, and try to stuff them into a round hole.  Why?  Because it’s just easier for the school to make them conform to the school’s way instead of doing what’s right for the child.

All over the U.S., moderately disabled children – children with IQ’s between 50 and 30 – are expected to be mainstreamed.  They’re expected to sit in regular classrooms with regular students and somehow glean everything they need to know to become as independent as possible.  Which is impossible.  They’re supposed to learn how to count and read and all those other lovely academic things, while life skills are somewhat ignored.  These special ed students, many of who have a hard time with transitions, are expected to transition more than the average student, as on top of everything else the regular students do, they also have to do special ed time and therapy time.

Special ed students have more expected of them, yet are given less.  The parents are expected to trust the schools, to do their best, and not complain if their child gets shortchanged, or jump through hoops to make school life easier, even if it means homelife suffers for it.

And at the end of the day – it doesn’t work.  Our children fall through the cracks.  And no one seems to care.

So I ask – where is the outrage?  Where are the parents, at school board meetings, demanding that special ed students get what they need too?  Why is it so hard for everyone to stand behind these parents who just want an appropriate education for their child too?  We all get outrage when a school district tries to cut art, music, athletics….but special education funding is cut every single year and no one says boo about it.

Maybe I’m ranting because I’ve had two different friends deal with stuff that shouldn’t have happened to their child this week and I’m outraged for them.  Maybe it’s because I’ve been part of such a terrific school system here that I’m terrified of leaving it.  Maybe it’s because I’m still pissed off at the special education director at Maura’s old school, who for two years pointed all the loopholes out to me as Maura got shortchanged.  Maybe I still feel that to her, Maura wasn’t worth the effort, the expenditure.

Maybe it’s all of the above.

I’m angry for my friends, scared for my daughter, and determined to do what’s right.  Maybe others will become outraged too, and instead of criticizing the seemingly over-zealous special ed parent, they’ll ask what is going on, how they can help.  Maybe next time the school district or federal government decides to try to cut funding for special education, they will stand up for it as much as they would for arts or athletic programs.

Because it’s not like we’re going to go anywhere – we can’t.  In the U.S., the options for a special education child with moderate disabilities are few to none.

I’m not really a bitch on wheels, looking to make heads roll.  I’m just the mouthy one who’ll say what other parents are thinking.  I’ve seen the coin on both sides – what works and what doesn’t.  I’ve dealt with some absolutely amazing special educators in both schools, and have worked alongside one amazing principal at Maura’s current school.  You can say I’ve been around enough to know that our kids, and those who actually day in, day out, work with them, deserve more and deserve better.

It’s time we all do what we teach our kids to do every day.  Stand up for the little guys.  In this case, the little guy is special education.  We share feel-good stories all the time on Facebook – it’s time we’re the feel good story makers. And for the love of St. Patrick, if you’re a special ed parent, don’t just share with your own kind, band together regardless of label.

Only then can we make a difference.

Every child deserves to reach their full potential.  Even mine.

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Is there a doctor in the house?

6 May

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

At this point, you may be wondering “Gee, did you take her to a doctor?”

The short answer is “Duh.”

The longer answer is this -

My husband at the time was self-employed.  Which means we had that special self-employed insurance.  You know, the kind you pay hundreds of dollars a month for but didn’t cover pesky things like “lab work”?

Lab work as in the karyotype.  Which, fyi, if you’re paying for out of pocket, will run you $1200.

So we were being slightly more cautious with who we went to see.  We decided our best option was a developmental pediatrician, with the hopes that this type of doctor could steer us in the right direction, whether that be geneticist or neurologist.  Our pediatrician sent the referral to the Behavior and Developmental Clinic at U of M.  Two to three weeks later, a woman called from the department.  She explained that Maura’s file would be reviewed by the doctors and they’d decide which doctor would be best to see her.  She asked what my biggest concern was at that time.  I answered “Well, she’s almost 20 months old and isn’t walking yet.”  She took note of that.

Four months after the referral, I finally took Maura to the appointment – which was one week after she’d started walking.

It turns out that when they reviewed Maura’s file, they read “20 months, not talking” and decided to send us for an autism evaluation.  I didn’t quite get this, new to the game that I was.  We went to see the nice pediatric psychologist, who did a bit of an evaluation on Maura (the Early Intervention director did a more in depth one honestly) and asked a few questions.  When did she start smiling?  How was she with her siblings? When did she start walking?  That one was easy, it was one week before, and I told her this proudly.

When she eyed Maura, who was walking about wobbly, and said “You know, for as long as she’s been walking, she should be more stable on her feet.”, I began to get a bad feeling about the appointment.  I also wondered which part of “One Week” she didn’t get.  I should have said that.  But in those days, I was nicer.

At the end of our appointment, the doctor looked at me, with a big smile on her face and announced cheerily the words that I assumed she thought I was desperate to hear – “Well, she’s not autistic!”

I looked at her dumbfounded and said “Well I know that.  What does she have?”

The doctor’s face dropped a bit.  “Oh, I’m not sure.  You’ll need to see a developmental pediatrician for that.”

I refrained from banging my head against the wall.  I may have muttered when I paid the receptionist the $250 for the appointment that my insurance wouldn’t cover because it didn’t cover “mental health issues”.

This is where you may say “But Phoebe, surely there was a state program that could help you out!”  And there was in Michigan.  Children’s Special Health Care, a type of Medicaid for children with special needs.  All you needed was a qualifying diagnosis.  Maura didn’t have the right terminology behind her name I found out, when talking to a very nice representative of said special health care program.  She said “Well, if you could get a diagnosis for her, then she could qualify.”

I replied to her “Yes, but we can’t afford to find a diagnosis without it.”

She agreed that this was a problem.

So many of us which children like Maura go through this.  We need to see doctors – lots of doctors.  We need to see specialists – very expensive specialists.  We need to run tests.  Blood tests, chromosome tests, urine tests.  They can run twenty, thirty, forty tests at once sometimes.  And that costs money.  These kids need therapies, which cost money out of pocket because they don’t have a handy label stating “This is necessary.”.  They need eyeglasses and shoe inserts or orthotics.  Which may only be partially covered – if you’re lucky.

People on the outside don’t get it.  You have to plan, you have to do research, and decide which path is worth the risk, worth investing in, which will give you the biggest payoff.  You don’t have the option of following every trail, so you pause to think and then choose as wisely as possible.

We had made the wrong choice.

Luckily, Josh had changed jobs, so we had insurance that actually covered some stuff.  Over the course of the next two years, we saw a geneticist, neurologist, ophthalmologist, audiologist and orthotics.  The older Maura got, the more her issues became apparent.

The audiologist (who we saw twice, to be sure) proved that Maura’s hearing was fine.  Which I did know, but we had to rule out potential hearing issues that could be the root of her lack of speech.  The orthotics specialist was seen after pressuring the physical therapist Maura was seeing, into realizing that Maura walked oddly – her feet rolled inwards, and it was as if she was walking on her insteps.  Soon Maura was fitted with AFO’s – Ankle Foot Orthotics.  Sure, they made her run like Forest Gump, but she could now run.  She went from babystepping everywhere to wandering off in a store before we realized it (she went to hang out with the Geek Squad at Best Buy.)

Our visit to the ophthalmologist was interesting. We went to him because one night, as I was going through Maura’s pictures on the computer, I realized that her one eye crossed way inwards.  Once I  noticed it, I couldn’t un-notice it.  I looked it up, read about strabismus, what the options were.  I made the appointment, prepared to hear that Maura would need corrective eye surgery.  Instead, I heard that she pseudo-strabismus – meaning the epicanthal folds around her eyes just made it appear her eyes were crossed.  I was gobsmacked.  I had gone two steps ahead and was prepared for surgery or prisms or patches – not “her eyes are fine.”

I looked at him and said “Are you sure?”

As he looked down to say yes, Maura must have done something weird with her eyes, because he grabbed a tool and looked back in her eyes, then frowned and said “You know, I’m not sure.  Come back in six months.”

For the next six months, I watched her turn her eyes in intermittently as they got worse.  It got to the point that strangers would asked if she was cross-eyed.  I’d say “No, apparently not.”  You know, to watch their jaws drop.  What can I say?  Having a special needs child warps your sense of humor.

The night before the appointment, I took pictures of Maura’s eyes as they crossed, sent them to the 1 hour photo place at Target, and picked them up on our way to the appointment.  I had six photos to show the doctor, all “proof” to me that her eyes crossed.

He laid out three photos.  “See these?  Classic pseudo-strabismus.”

He laid out the other three photos.  “See these?  Classic strabismus.”

She had both types.  That’s my girl.  We left with a prescription for glasses.

We saw the geneticist, who ran all sorts of specific chromosome tests as well as a microarray.  I remember impressing him with my vast knowledge of disorders as he asked me random questions – I’d spent hours upon hours online looking up Maura’s symptoms in hopes of figuring her out.  So when he started asking about regression, I said “I know where you’re going with this.”  He said “Oh?  What do you think I’m asking about?”  I said Rett Syndrome.  I was right.  We both agreed that we didn’t think she had that, but ran the test anyway – because at that point, I learned that if we’re going to draw blood on Maura, we might as well run as many tests as possible to make it worth our while.

The geneticist brought  no answers, though reassured us that no answers were also good, because we’d ruled out all the things with scary medical issues.  Better to have no answers than one with tragic results.  Eventually we got the “Well, come back in two years, maybe something new will pop up.”

Meanwhile, we were also seeing a neurologist, who did his thing, and ordered some metabolic tests.  This lead to a very frustrating day at the hospital lab, having to explain that no, my child isn’t potty trained, no, she can’t pee in a cup on demand, before they finally bagged her and I sat around for an hour with four kids in a waiting room for Maura to fill said bag.  The tests came back normal.

When we went back for the next appointment with the neurologist, Josh came along with me.  The doctor went over results, what are next options were (MRI) and all.  I remember Maura playing with blocks oddly enough.  Josh, who is the kind of guy not afraid to ask the tough questions, asked this one – “Do you think she has something?”

Mind you – up until this point, everyone we had seen would be optimistic.  “She might catch up…” was the theme song.

This doctor was more blunt – in a good way.  I will never forget his words.  “Oh!  She’s got something, that’s for certain.  What it is though, you may never know.”  Then explained how kids like Maura – who have delays, but no regression, no major health issues – well, they’re just not that sexy to medical researchers.  One child like Maura isn’t as interesting as 100 kids with autism.  So they’re going to research autism.  Or ADHD.  Or Down Syndrome.  Or whatever is the hot topic of the medical day.

Children like Maura, who have issues but are in good health, just aren’t that interesting to them.  There’s no funding for them.

Nice, huh?

But this doctor was interested in Maura’s well-being, and was willing to be honest and upfront with us.  Sure, the news could have been depressing, but in a way, it was actually a relief.  We weren’t crazy, there was definitely something going on with Maura.  And it wasn’t our fault that we couldn’t figure out what that was.  We were doing all the right things – medical science just had to catch up to us.

We ran an MRI to rule out any abnormalities that might cause her delays.  I was certain they’d find sunshine, rainbows and daisies in her head.  What they found was a very normal looking brain.  The neurologist told us how at this point, there were no good avenues left for us without getting really invasive (like muscle biopsies), but that would be Russian Roulette basically.  He stated how he didn’t want to waste our time or money, so we didn’t need to keep coming back every few months, we could come back in two years.  He did state however that if anything came up, to not hesitate to call him.

So after two years of tests and doctors, we hit our dead end.  We’d have to wait it out for a bit.

Turns out “a bit” was actually just three months later, when Maura had her first tonic-clonic seizure.

Maura likes to keep us on our toes like that.

When the geneticist asked for photos of Maura's body parts, I also added this one, because I wanted to make sure he'd remember that she was first a bright beautiful happy girl.

When the geneticist asked for photos of Maura’s body parts, I also added this one, because I wanted to make sure he’d remember that she was first a bright beautiful happy girl.  It’s one of my favorites.

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Let the Games Begin!

3 May

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

Just as we were realizing there was more to Maura than just dimples, drool and happiness, we moved to a new town, which meant a new school for the boys.  Right away, the speech therapist (ST) at the school met with us, as the boys had issues with articulation.  Maura came with me to that IEP meeting, and went from my hip to my lap to holding on for dear life to the edge of the table while trying to gnaw on it (her mouthy tendencies were in full swing at that point.)

The ST mentioned they wanted to check one son for fine motor skill issues, as he had terrible handwriting.  I laughed and said “It’s my  month for motor skill issues.”  The ST asked why, and I pointed to Maura and said we just found out she may have delays.  She asked if I’d signed Maura up for Early Intervention yet, and I explained I hadn’t because of the move, but was looking into it (and found it all confusing, as you had to go through the county department to find the local person, and I was doing this all on my own.)

The ST jumped into action.  “You need to call her.” she said, as she wrote down the name and number of the local Early Intervention (E.I.) director.  The stage was set, it was time to call ”Action!” on the new phase of our life, with all the therapists and questions.

So I called the EI director, who was at my house in record time to do Maura’s first Big Deal Evaluation.

It was kind of humorous.  Maura failed a whole section because I never even tried to teach her patty cake.  My oldest two hated it, so I never bothered after that.  Who knew patty cake was such an important life skill?  She also failed the “Put the small object into the small container” test, though I thought it was unfair.  She did do it…kind of…she put the Cheerio in her mouth.

But it was a lot of “Can she do this?” and me saying “No.”

“What about this?”

“No.”

“Or this?”

*sigh* “Nooo.”

The good news was, she qualified for services.  The bad news was that she seemed even further behind than I thought.  And I hadn’t even filled out the speech therapy questionnaire.  Where with gross and fine motor skills, she scored about 9-12 months at 16 months, with speech, she scored at about 6 months of age at 16 months.

It was depressing.  Figuratively and literally.  Depressing.

I had had post-partum depression to a degree with all my children, with Maura the strongest.  Manageable, but there none the less.  It had been easing up by her first birthday.  But then, as it eased up, I was hit with the news of Maura’s delays and without realizing it, my waning post-partum depression went straight into “there’s something wrong with my baby” depression.  But it would take another year for me to really figure that out and do something about it.

In the meantime, I started to do research online, took Maura to her therapies every Monday, and bought her every obnoxious but hopefully motivating toy possible.  I refer to that now as the “magic toy period” – because I had this theory that if I just found the right toy that motivated her and built up skills, then she’d suddenly have a spurt in development and start to catch up.

Yeah, that didn’t happen.

What did happen was that every Monday, I got up, got kids off to school and took Maura for one half hour of physical therapy and one half hour of occupational therapy.  Again, Hindsight points out that Maura probably needed much more therapy.  But that was the most they could provide with the data they had on her, and the OT and PT assured me we were doing all the Right Things at home.

I also learned that Maura’s fine motor skills were lousy, and she had no sense of self-preservation.  As in, we had to teach her to put her hands out when falling forward.

We also learned that Maura had inherited the wicked stubborn streak that was in the family.  She wasn’t going to do anything until she was good and ready to do it.  That included walking.

Months we spent, trying to convince her she could walk.  We offered push toys, but the moment they started rolling she’d drop to the ground.  She could climb onto the couch, onto the back of the couch and into the window to get at the cat, but refused to walk.  She started climbing stairs – a skill that’s supposed to come way after walking – but would not walk.  The PT assured me that Maura should be walking by Christmas.  Maura proved her wrong.

In the meantime, I joined a playgroup that was run by First Steps, where all the other local moms went to.  I was still really new in town, really didn’t know anyone, and they said this would be good to help Maura develop.  I’ll admit, I was hesitant, because the idea of watching all the other toddlers do things Maura couldn’t do was disheartening.  But I was all on the “Whatever will help Maura” bandwagon, so off I went.  Where I met a great group of women who didn’t care if Maura was delayed or not.

I soon figured out when it came to Maura’s issues, I was very open about it.  When a new friend asked bluntly “So, what IS wrong with her?” as we sat at a play area, other moms gasped, but I just laughed it off.  It was an honest question, asked with the intent of wanting to understand more.  And so I said just as bluntly “I don’t know.”   What I really didn’t know was how long I’d be answering the first question with that statement.  Which was probably a good thing.

Life continued along this path.  Therapies on Monday (where we added speech therapy to the mix after Christmas), playgroups twice a week, researching online, figuring out who to see next in the medical world, and trying to convince Maura she could walk on her own.

Age 20 months came and went, and Maura still wouldn’t walk.  Twenty-one months.  Twenty-two months.  If you set her far enough back from you, she’d take three or for steps then lunge for you.  You were forced to catch her because when she fell, she fell flat on her face.  She couldn’t catch herself.  Maura had every faith that when she lunged, you would catch her.  She refused to try any sort of wheeled aide in walking, she didn’t trust them.

We were at a stand-still.

One day, right as Maura turned 23 months old, we went to playgroup, which was held in a former school building.  We took all the kids into the big gym so they could run around, ride trikes and scooters, climb up the slide.  I sat there, holding Maura on my lap, and saw all these kids younger and older than her running…just running…and I felt so sad that my girl couldn’t do that.  I just had this overwhelming urge to cry.

But I’m not really a crier, especially in front of people.  I’m more the “bottle them all up until one day, you explode” type of gal.  I’m also a “crying gets you no where” chick, so I shook off the blue mood and went “Okay, let’s work on this.”

I had realized that Maura and I were sitting on a stack of mats – soft, cushy mats.  It occurred to me that I could stand Maura much farther away from me and if she tried to lunge, she’d fall on a nice soft cushy mat.

So I stood her on the mat and scooted backwards, out of arm’s reach, and held my breath.

I expected her to take three steps and fall over.

She took three tiny steps…then a fourth…fifth…sixth…

I couldn’t believe it.  On that cushy unstable surface of a mat, my baby girl was actually walking.  I scooted back a bit more as she got close to me.  She took more steps.  I wanted to shout to everyone to look and see what she was FINALLY doing…but I knew that would spook her.  So I just screamed in happiness in my head until Maura made her way to me, then gave her a big hug.

Five minutes before, I was a moment from crying.  And then just like that, it became the best day ever.

By the time we got to see the physical therapist again a few days later, Maura was taking lots of steps.  It was as if she was not going to walk until she was certain she wouldn’t fall over.  And go figure, once she could walk, she loved all the push toys she rejected as walking aides before.

Maura finally walking also gave me a sense of relief.  We weren’t sure what road we were headed down with her, but at least she could walk down it with us.

4/16/05 - the day Maura officially started walking

4/16/05 – the day Maura officially started walking

 

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The Day the Earth Stood Still

2 May

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

Maura at one year old

Maura at one year old

Maura’s first birthday came and went with cake, ice cream, and the discovery that she was terrified of lit candles (picture Maura, screaming in her high chair, tiny cake with candle flickering, me saying “Blow it out!” as the older three kids are all “But Mom, we haven’t finished the song!”  “Just blow it out!”  – Maura did love the cake though.  Proving cake makes everything better.)

At this point, Maura had outgrown her hatred of car seats.  We could now travel without fear of arriving with bleeding ears.  She also literally, in a minute, changed her views on bathing.  She went from screaming to me showing her how she could splash the water to laughing hysterically in the tub just like that.

Hindsight and a lot of time hanging around therapists has led me to figure out why she hated the car seat and the bath.  It was because she couldn’t control her body.  If she moved right, she kept going right.  She didn’t have the ability to correct herself for months.  Once she was able to do that, she was able to enjoy herself in the bath, and not be afraid of car rides.

When Maura was thirteen months I finally got her to her twelve month appointment.  We saw the nurse practitioner, who weighed and measured her, asked all the questions – including if she was walking yet.  I can still remember us sitting in chairs and Maura standing holding onto my leg, then holding onto the NP’s leg as this was asked.  I probably joked that she was a late bloomer compared to the others.  The NP didn’t seem concerned…except she did lay Maura back on the table and maneuvered her legs about.  She said “She does seem to have a little low muscle tone.”  then stated that if Maura wasn’t walking by fifteen months, to bring her back for another check up.

At that time, I belonged to one of those internet baby boards.  There was one mom there with a little girl Maura’s age, who ended up being diagnosed with Rett Syndrome.   I remembered her saying her daughter had low muscle tone and needed extra help.  That low muscle tone could be a sign for something else.

Alarm bells started going off.  I started paying more attention to what Maura could and could not do.  She still couldn’t sit well – I had a shopping cart insert for the cart seat so that when she flopped over, she’d land on something soft.  I’d prop her up in the seat with my purse and a jacket or a box of cereal or something.  I noticed that despite being a pro at self-feeding, she didn’t use a pincer grasp.  Sippy cups were a trial – I went through several brands before we found one that suited her.  She hated grass.

And so the summer passed.  Maura remained all things sunny and happy, but she didn’t walk.  So at fifteen months, we went to see our doctor. That visit is one of those things burned into my memory.  I can remember the older three milling about playing with toys.  I remember Maura standing on the table, holding onto the doctor’s hands, all smiles and dimples for him.  I remember how normal it all felt at that moment, not knowing how a few words would suddenly pull the rug out from under us.  It was the last moments I’d have a “normal” baby.

The doctor was hesitant.  Looked her over once, twice.  He paused, and in a way that made you know he didn’t want to say what he had to say, the words came out of his mouth…

“I hate to even bring this up, because I’m 99% certain she doesn’t have it…I just feel like we should rule it out…but I’d like to run a blood test for Down Syndrome…I’m sure she doesn’t have it, but she does have some delays and physical characteristics, it would be good to rule that out…”

And the world stopped for me.

There she was, my happy girl, still holding onto the doctor’s fingers, smiling.  The older three still buzzing about on the floor.  Josh asking the doctor questions.  I could feel it all around me, and yet my world had paused.  I remember clearly thinking “Wow.  You really do go numb when you get bad news from a doctor.”

Then I blinked and somehow, we were all checking hands for a simian crease (now usually called a palmar crease.)  A single long crease in the palm of your hand that stretches clear across the whole palm, without a break.  There we were, three adults, looking at our hands and then Maura’s hand (she has one on her right hand) and then at the hands of the other children (go figure, Miriam also has one.)  And then he explained how that, plus the epicanthal folds around her eyes, coupled with what he considered a more significant amount of low muscle tone than we’d first thought – those were all signs that we should run a karyotype.

I left the office carrying Maura, holding paperwork for a blood test.  We walked out into the bright sunny day, Josh and the older three kids ahead of us.  All I wanted to do was hold my baby and sob.  But that wasn’t a great idea in the middle of a parking lot in front of impressionable young children.  So I didn’t sob.  I got to the car, got home, then turned around and took Maura straight to the lab for blood work.

And then, I did what any normal mother would do – I took her straight to the toy store and urged her to pick out a toy.  We chose a baby doll  We still have that doll.

Then, we waited. I stewed and worried a bit.  I got annoyed with the doctor for pointing out the epicanthal folds, because where once, I looked at Maura’s face and saw big blue eyes, now I saw Signs that Something was Wrong.  Eventually, that feeling faded, but it was there for a bit.

I also got this incredible urge to get pregnant Right Away.  To prove I could have a “normal” child.  To hopefully give Miriam a “normal” sister.  Then I slapped myself.  Miriam loved Maura the way she was.  She still loves Maura as she is.  And my children have proven that they are nothing close to normal.  That would require normal parents, which we failed at already.

What I did find during those two weeks of waiting for lab results was a blog, written by a mother whose infant daughter had leukemia.  By the time I’d heard about it, things were not going well.  While I waited for Maura’s tests results, I read about this child, who was dying.  As awful as it sounds, it was the reality check I needed at the time.  I could mope and mourn for the child I still had, or I could be grateful for what I did have.  I still had a healthy beautiful happy girl.  She was still going to grow – maybe not in ways we’d originally hoped – but she would grow, and be with us. My child was alive.  Not everyone gets that chance.   There were worse things than whatever that karyotype would offer.

I got ready for what life would hand me.

Life handed me normal test results.

This would be a reoccurring theme, we just didn’t know it yet.  So after all that build up, all that waiting, a tense phone call of “Oh no, test results will be at least another week….oh, wait, our bad…here they are…” we were braced for bad news that didn’t quite come.

Because while the tests were normal, we realized that Maura…wasn’t quite…

The doctor gave us options – we could wait it out, see if she’d catch up, or contact Early Intervention and get assessments and hopefully therapies.

Denial time was over.  The earth started to spin again.  It was time to be proactive.

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