No, seriously, I tend to do this little eye-twitchy thing when I hear the word “autism”.

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

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

Oh, the naivety of it all.

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

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

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

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

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

Say what?

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

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

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

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

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

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

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

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

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

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

Now imagine not twitching a little when you hear X.

For me X = Autism.

And that’s where I’m coming from.

Here’s the deal – if you’ve never had a special needs child, do not tell us how to manage ours.  Telling us to spank our kids when they’re “bad” is ridiculous.  Telling us “Oh I know!  My two year old does that.”  isn’t helpful.  Because your two year old?  Will grow out of that behavior.  My kid may not.

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

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

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

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

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

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

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

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

Love,

the crazy lady with the special needs kid

Tonight, we took our children to see Shrek #4.  A children’s movie at a theater that charges $3 a ticket.  We’re not in some high class establishment, we’re not watching the latest indie art film.  It was Shrek. 

Therefore, I will not apologize that my daughter’s behavior disturbed you.  Yes, she squealed with delight when I presented her with her own little bucket of popcorn.  She actually wasn’t that loud.  Trust me, she could have been a lot louder.  You wincing in pain, turning to look at her, then spending the next five minutes rubbing your offended ear was overkill.  Spending the rest of the movie turning to stare at her, glare at her, and give her prolonged glances every time she breathed too loudly, bounced in her seat, laughed, or bumped your chair was unnecessary as well. 

If you don’t want to deal with kids at movies, here’s some advice – don’t go to a kid’s movie.  The fact that you spent half the movie giving a little girl with special needs the fish eye just makes you that much more of a jerk.  For the record, Maura behaved really well. 

Unlike you.

You find  yourself reading articles on the best children’s hospitals in the U.S.

You know the ins and outs of the local medical center.

You have to buy a separate card holder for all the business cards of your doctors, plus hospital cards, insurance cards, cards with prescriptions on them, etc.

You have so many medicine syringes, you find them in odd places like your purse, your car, the driveway…

You start to have a favorite pharmacy.

You have a favorite doctor.

You forget about well-child check-ups not b/c you don’t want to go, but because you saw so many doctors that year, it just actually slipped your mind.

You’ve done the above more than once.

You are prepared to handle just about any question a person has for you about your child, to the point that you sound like you’re giving a prepared speech.

Yet there is still times when you’re completely blown away by someones question.  And not in a good way.

You watch Discovery Health Channel.  A lot.

You treat “Mystery Diagnosis” like an episode of Jeopardy and are proud when you’ve figured out what’s wrong long before the show tells  you.

You hope to be on “Mystery Diagnosis”.

You’re familiar with many different rare disorders after reading about them online.

You’ve spent any time at all at rarediseases.org

Your other children are well-versed in which doctor visits require packing Nintendo’s and books, don’t bat an eye when you have to take their sibling to the ER, and assume that every doctor appointment is for their sibling and not them. 

You don’t really think any of this is a whole lot because you know that others are going through so much more.

You’ve learned to count your blessings and enjoy life as it is – with all its surprises and unanswered questions.  Because sometimes, you don’t want that particular answer.

I often wonder what the world might look like through Maura’s eyes.  From what we can tell, Maura’s world is an amazing place full of wonderful things to discover.   She can find joy in the tiniest things – like being given a penny or picking a dandelion.  But she also finds other things really cool – like sports cars of all things (my grandfather would be so proud!) 

Oddly enough, for the most part, the world is not a scary place to her.  Oh, she does proceed with caution with some things – tunnels, playground bridges that sway, kiwi.  But with the right person by her side, she can usually overcome any fears she has.

Yes, the world is basically a place of happiness for Maura.  In her world, everyone must love her.  She assumes you like her and she will instantly like most people.  And somehow, she conveys this because most people upon first meeting Maura will instantly fall  under her spell.  She assumes you are their to entertain her and bend to her whims and we fall in line like the good little servants we are.

But her main world is all about her family.  She loves us to pieces.  She is worried if one of us is missing.  She makes sure I don’t accidentally leave anyone behind.  And if Maura is the one left behind – hold onto your ears because she will make her displeasure known in loud ways.   

Maura knows that Collin doesn’t like to be hugged  much, and so despite being Princess Hugs-a-lot, Maura doesn’t actually hug him often.  I am fascinated about how she knows this, and knows that she can still look to him for comfort and support.  He’s the one to help her, fix things, and in true Oldest Child form, boss her around. 

Sean is the brother that allows the hugs – and so he tolerates all she gives him.  She trusts him completely, to the point that one day, I walked in to Sean going “Oh, I have a new game with Maura, watch this!” and he proceeded to heft her up by the ankles and swing her about while she laughed.  She knows that either of her brothers will take care of her, no matter what, and that with them, she is safe. 

With Miriam – Miriam is the most beloved older sister. To say Maura adores her is an understatement.  Maura sees Miriam probably as her best friend, her total playmate.  From day one, Miriam was certain she could take care of Maura, which is good because Maura is certain Miriam can take care of her.  Miriam teaches her how to be a girl – from the high pitched girly squeal to playing dress-up.  Maura is certain that Miriam has to do what she is doing – like go to bed.  Heaven forbid Maura has to go to bed without Miriam doing the same.  And Maura is also certain she can do whatever Mim can do.

See, in Maura’s world, there is nothing wrong with her.  She is perfectly fine and happy with who she is.  It’s us that project our sense of what is right and wrong onto Maura.  People can look at Maura and think “Oh, I wonder what’s wrong with her?”  Maura looks at people and thinks “Hey!  Look at me!  I’m awesome!” 

Maura is the girl who looks at the world through rose-colored glasses.  From her view everything is right and good and love always prevails.  Life is simple, moves at a slower pace,and full of things to enjoy.  There’s time to splash in puddles and giggle at something funny, time to get truly excited over ice cream or to savor a good snuggle.  And there is no competition in Maura’s world – she always cheers for both teams, and will cheer for you whether you come in first place or last. 

I’ve said it before, and I will say it again – the world would be a much better place if we all had Maura’s attitude.

Last time, I wrote about the child you lose when you find out your child has special needs.  But with something lost, there is something gained.

Maura was my fourth child and I thought I knew it all.  She taught me that I didn’t know it all, that there was much more to be learned.  And I’ve learned.  Boy, have I learned!

I may have lost the child Maura could have been, but the child she is has been amazing to know.  Maura is definitely different.  Not just because of her issues, but also because of her attitude and personality.  It really is something you sort of have to see for yourself.  Those of you lucky enough to know her understand. 

Maura is a child who has always been able to smile with her whole face.  When she’s happy – which is almost always – she radiates that.  She assumes everyone loves her, and because of that, you can’t help but make that assumption true.  She takes pure joy out of doing things she loves, like dance class or playing in the pool.  She gets excited over the littlest things, like being given a penny, or blowing dandelion puffs.  A hug from her makes anyone’s day better. 

She reminds you that it’s okay to go slowly, to celebrate the small victories.  She is naturally relaxing.  As an infant, we would fight to hold her because she could relax you so much, you’d fall right asleep with her.  She still has that power sometimes. 

Maura may currently have the mind of a three year old, but she’s a three year old that knows her mind.  She is picky about her clothes, loves fun shoes, chooses awesome frames every time she gets new glasses.  She has her likes and dislikes, whether is food, shows or music. Even for an almost seven year old, she has particular taste in music.

It’s funny – when she was a baby, I noticed her ears were slightly pointy, and I jokingly called her my elfin baby.  Even then I guess I could see there was something different about her.  Like she’s some magical little creature.  Every so often she does get this other-worldly look about her and it makes you desperate to know what goes on in her head. 

I also noticed that her look isn’t as mature as other girls her age.  I have friends with daughters who are the same age and they look so much older than Maura, even though Maura is bigger than most of them physically.  Her face reflects her development.  I do believe that Maura will be child-like all her life.  She will always have this innocence about her.  And how many of us have wished for a certain amount of innocence back?  In a way, she is luckier than us. 

And she is loved.  So very loved.  I used to get worried when we’d meet new people, or visit family after they hadn’t seen her in years.  Would they accept her?  Or would they look down on her?  My fears were silly, my Maura charmed just about every single person she met.  She’s even charmed people she hasn’t met.  And those few people who she didn’t charm?  I learned to chalk it up to “their loss”.  They obviously weren’t special enough to earn her smile. 

I know there are some who think “Oh, you poor thing.  There’s something wrong with your child.  How awful!”  The message I want to send to them is this.  It isn’t awful, and your pity is not needed here.  Being Maura’s mother has taught me so much, made me realize that I can handle things I never dreamt I could have handle.  It is a daily reminder about how lucky I am to have three other wonderful, healthy, compassionate children, and an amazing husband who truly is a great father.  It has taught me to appreciate all that does go right for us, that a sense of humor can get me through most things, that there are no guarantees in life so don’t take anything for granted. 

Maura wasn’t the child I thought I was supposed to have.  But I am so grateful to have been chosen to be her mother. 

I’m usually one to think positive, speak positive about our experiences.  But with Maura’s birthday looming and thinking of different things to write about this month, this thought popped into my head.

See, there is a level of loss when you discover your child has a special need.  Especially if you discover this later than sooner.  For us, we didn’t discover Maura had issues until she was fifteen months.  I am still a little amazed at how one day we walked into the doctor’s office with a perfectly normal child, and left without her.  In her place was this child who needed blood tests for chromosomal disorders.  Who had delays and physical markers for genetic issues.  It was as if we were handed a changeling.  I remember being very angry with our beloved pediatrician, because he pointed out the epicanthal folds around Maura’s eyes.  Until he pointed them out, I just thought she had the prettiest blue eyes.  After he pointed them out, they were all I could see for a while.  Eventually though, I did stop seeing them.  But I always remember they are there.

When you have a child, you have dreams of what their future may be like.  First steps, first day of school, making friends, growing year by year.  Eventually those dreams take you to their high school graduation, college days, wedding days. 

When you have a child with special needs, you find yourself giving up on those dreams.  One by one, as the delays become more apparent, you give up things.  At first it was “Okay, she’s going to have to catch up.”  Then it was “Okay, maybe she won’t go to college.”  Before we could truly process things, we were letting go of dreams and dealing just day-to-day.  It was easier that way.

I used to look at Maura and try to see the child she should have been.  The one who walked on time, who talked on time, who chatted my ear off, asking “Why?” four thousand times a day.  I’d try to see what she’d be like without the delays that kept her from maturing.  What she’d be doing if she was a typical three-four-five year old.   I could almost see that child Maura could have become. That child who for the first fifteen months of her life, she was going to be.  The one who doctors kept saying she might catch up too.

Then one day, I realized that doctors had stopped saying “She might catch up.”  And that child she could have been was barely visible. 

Maura’s about to turn seven years old.  She should be doing so much.  She should be finishing first grade. She should be potty trained and dressing herself and worrying about what some other little girl said on the playground.  She could be reading and doing math and telling me how she’s going to be a rock star when she grows up.  But she doesn’t do any of that – that child was lost to us the day the doctor said “I want to send you for a blood test….”  We were just too naive to realize it at the time.

One day, when Maura was three, I had her with me when I went to see my therapist.  She was watching Maura doing her thing, then said to me matter-of-factly “You know she will probably always live with you.”  It was the first time anyone dared to say that to me.  I answered yes – and realized that I did know that.  It was just never addressed before.  It was that ugly reality of “your child will never graduate high school, go off to college, get married…no, she will never be independent”.  It was something that needed to be brought out into the harsh light and acknowledged.  I did, then tucked it back into the closet.  I know it’s there.  I just don’t need it staring me in the face every day. 

More ugly truths had to be addressed.  The child Maura was supposed to be was also supposed to be perfectly healthy.  With our older three, we rarely saw a pediatrician.  Soon we were seeing doctor after specialist.  I learned which lab did good blood draws on children and my way around the medical center.  Things seemed to mellow out, only for her to have a seizure and start us down a new path.  One we’re still trying to figure out.

The way she started kindergarten was also not how it could have been.  The biggest drama should have been having the right backpack and lunch box.  Instead it was “Can the school even handle her?”  We had a meeting with fourteen other people to determine that.  We had the same sort of meeting to determine what her first grade year will be like. 

In what seems like a very long time ago, I came to the realization that even if I was actually given the choice of keeping Maura the way she was, or being able to wish her into “normal”, I would choose to keep her the way she was.  Because at the end of the day, she really is an amazing little creature who is full of joy and happiness.  Making her normal might take that away, and it just wasn’t worth the risk.  On another special needs blog that I can no longer find, a father wrote how his daughter was the way God wished us all to be – innocent and joyful.  I think of Maura that way.  I joke that the world would be a much better place if we all had Maura’s attitude towards life.  But that doesn’t mean I won’t always be a little haunted by the child she could have been.

I know I’m not alone in this.  I think this happens to other parents as they watch their children struggle with a disease or syndrome.  We can love our kids, never want to change them, and still wish we could take away the struggle and let them have some normalcy.  We see glimpses of the child they could have been.  I’m beginning to realize that it will never go away.

I think it is one of those unrealized until pointed out things, invisible disabilities.  An invisible disability is one you can’t see.  Maura can be classified as such. 

When you first see Maura, you see a little girl with brown hair and glasses and usually a big smile. You may say “Hi there!  What’s your name?”  Up until last fall, she couldn’t tell you her name, which was always the first indicator for a stranger that maybe this wasn’t a typical child.  Now she says “Mo-wah.” , which we are so very proud of and geeked about.  You don’t realize how many people ask you your child’s name until you have one that can’t answer that question.

If you saw Maura hanging out in a crowd of kids, she wouldn’t immediately stand out.  It’s not until she let’s out a screech or lays on the ground or licks a screen door that you go “Oh…my.”  Now in Maura’s defense, she has never licked a screen door (that was Sean as a toddler.)  She has licked windows at the post office, the check out counter at the market, and other odd things.  Trust me, when your school-aged child licks a door, people take notice!

Having an invisible disability is a blessing and curse.  We all want our kids to fit in, to blend sometimes, and if you can’t see the disability, you have that opportunity to have those moments of blending.  But then the curse kicks in.  Because even though they look normal, they act differently.  People expect then to act as normal as they look and frown upon behaviors that they otherwise might not have if the child was visibly disabled.  The older the child gets, the more looks you get.  Especially from other children.  I sometimes find myself in a staring contest with some eight year old girl.  Oh, I know she doesn’t mean to be rude, but the mama bear in me wants to offer her a Polaroid camera and tell her to take a picture, it’ll last longer.  Or just stick my tongue out at them.  But that would be immature and I save that for very choice moments.

There is one time that stands out in my head, when the whole invisible disability thing reared its ugly head.  It did so in the shape of an interferring older woman who obviously knew everything about raising children.  Maura was just about to turn three years old.  We were still using a stroller with her because she was so slow when it came to walking, and got tired easily.  She and I went to a bookstore, I pulled out the stroller so we could get through the parking lot quickly.  Once inside the store, she wanted to walk about, so I let her, using the stroller as a shopping cart.  A couple people smiled at the sight.  And then this woman came up to me.

“You should get rid of the stroller.” she stated.

Excuse me?

“She’s too big to be using a stroller.  When my kids were her age, I got rid of the stroller and MADE them walk.  You need to get rid of that stroller and MAKE her walk!”

This woman was very lucky.  She caught me on a good day.  Instead of losing it on her, telling her to take her opinion and shove it because she had no clue why we were using a stroller with Maura, I politely informed her that my daughter had a medical condition, she had barely been walking for a year, and while she loved  to walk, we needed to use a stroller, thankyouverymuch. I was very proud of myself for handling it so well.  I come from a long line of Irish women who don’t stand for that sort of crap and have no problem saying so in very loud tones.  It could have gotten very ugly.

The moral of the story is – if you see a child throwing a fit in the middle of the store, don’t instantly assume they’re just a naughty child.  They may have autism or a sensory disorder where they can’t control their reactions.  A bigger child in a stroller may have a muscular issue and need a ride.  A seven year old playing in the little kid section of the play structure may be there because mentally, they’re only three. Look before you leap to conclusions, that’s all we ask.

These days, it’s all about awareness.  Bringing information to the masses about a particular cause, disease, or syndrome.  After months of having people ask me to join their cause and bring awareness to what concerned them, I thought “You know what?  Kids like Maura need awareness too!”

So I decided the month of May will be Maura Awareness Month.  Maura is just one of many children who live their lives without a diagnosis. No one can say how many, but some studies show that upwards of 30 to 40 percent of kids who are diagnosed with delays will never receive a specific diagnosis. 

In this day and age, people can be anti-label.  But there are drawbacks to not having a specific diagnosis.  For example, when Maura was younger, Josh was self-employed, which meant we had crappy self-employed insurance.  We were told by a nurse to check out Children’s Special Health Care, a program through the state that was like Medicaid.  I was informed by CSHC that Maura did not qualify because she didn’t have a qualifying diagnosis.  But if I could get her diagnosed, then we could apply for it.  I informed the woman that the problem was that we couldn’t afford a lot of the testing to get the necessary diagnosis – at the time, our insurance didn’t cover lab work….found that out after a $1200 blood test.  It also didn’t cover the trip to the pediatric psychologist that ruled out autism, as that was considered “mental health”.

Without a specific diagnosis, you do not have even a basic road map as to your child’s developmental future.  Maura could keep progressing at a good rate.  Maura could stop all progress tomorrow.  We don’t know, so we have to treat her like it may all go away tomorrow.  We also don’t know her medical future.  If you have certain syndromes, there are studies that can tell you if there are higher rates of developing kidney disease after age five, a seizure disorder by age ten, or scoliosis during puberty.  We don’t know what Maura might end up with.  We had zero warning that she’d develop seizures.  We don’t know what else is in store for her medically.  Hopefully nothing.  But any odd behavior we have to have checked out.

There is also the constant question of “Are we treating her correctly?  Are we doing the right therapies?”    Some therapies we don’t qualify for because they’re diagnosis specific.  To qualify, you have the right diagnosis.  Same with most support groups or parent groups.   Some parents  have been wonderful, especially one who are dealing with a rare syndrome.  Other parents have been less-than-helpful to me.  One actually told me to my face that we had it easy, our child didn’t have autism.  That one blew me away. 

On top of all of this, which can be stressful enough, there are times when the parent is judged.  That it is somehow you’re fault that your child doesn’t have a specific diagnosis.  There’s this misconception that doctors know all.  That if we just went to the correct specialist and had the right test done, we would have a diagnosis.  Here’s the truth – doctors don’t know everything.  Going to one doesn’t guarantee you leave with an answer.  Going to seven different ones also doesn’t guarantee answers either.  But not being able to get an answer doesn’t make you a bad parent.  Just a sometimes frustrated one.

Maura is our little wonder of a puzzle that we’re trying to piece together constantly.  We haven’t stopped looking for a specific diagnosis for her.  But in the meantime, we keep living our lives, doing what we can, enjoying our little girl and marveling at what a truly unique little creature she is.  I do joke though that my goal is to be on  “Mystery Diagnosis” – and when people ask me why, I respond “Because then we’ll have a diagnosis for her.”

As someone who is asked “Are you sure it’s not autism?”, this documentary caught my eye.  Autism is so out there in the news and media thanks to awareness campaigns.  But are there times doctors are too quick to label a child that?  What if one specialist says “Yes, it’s autism.” and another says “No, it’s not autism, but we’re not quite sure what it is.”  How do you treat something you’re not sure of?

This is what this documentary is about – one family’s journey in trying to find the proper diagnosis and treatment for their child.   I can relate to this as a parent whose child has no diagnosis, not even a fuzzy one, and no guide to proper treatment.  You flail about, try your best and hope something works.

Austic-Like:Graham’s Story