Saturday, April 23, 2011

Diagnoses and Labels

I've been thinking a lot lately about diagnoses and labels.  More specifically, my children's diagnoses. A little over a year ago, after 6 months of tests and interviews and questionnaires, our neurologist told us Munchkin has a "High functioning PDD-nos."  We had no clue what that meant at the time.  It was towards the end of the meeting that the word "Autism" was thrown into the mix, and the ton of bricks hit my heart.

Fast forward almost exactly a year, and it became evident that Squirrel was struggling too.  Three months of testing, interviews, and even more questionnaires, and we were given another report by the same neurologist.  This one told us our girl had "Developmental delays associated with Sensory Integration Dysfunction."  It also listed many other things as secondary diagnoses, including depression, anxiety disorder, ADHD, a tic disorder (not otherwise specified), and Obsessive-Compulsive disorder.  Again, my heart was crushed.

I've accepted, and even embraced, Munchkin's diagnosis.  I know that it fits what's going on with him at this time, though he is making such great strides in his development, that I doubt he will qualify for an Autism Spectrum diagnosis forever.  In two more years, we'll take him back for a full evaluation again, and I don't know what they'll say then.  I know he'll always have sensory and motor issues, and probably always struggle with social issues.  But what about the rest of it?

And then there's Squirrel.  She's working with a team of professionals right now.  Her psychiatrist is treating her with medication for a Generalized Anxiety Disorder.  She also wants to start her on ADHD medication.  I'm not sure how I feel about that.  Not that I'm against medication--I'm just not sure her ADHD is "severe" enough to warrant drug intervention.  She has a 4.0 grade point average, so it's not affecting her grades.  She struggles a lot with organization and study skills, but are there other ways to help this without medication?  Or are her other emotional issues so great right now, that we should go ahead and start treating the ADHD so her little brain can focus on one difficulty at a time?  That's kind of where I'm thinking right now.

Squirrel also sees a therapist for counseling.  He doesn't completely agree with the psychiatrist's diagnosis.  He says she has a serious anxiety disorder, but he thinks she's also experiencing periods of mania and depression.  Are we possibly looking at another diagnosis here?  Both depression and Bipolar disorder run in the family, so there could be a genetic predisposition to it.  He also doesn't see the ADHD at all, and thinks the obsessive thoughts are more an issue (from the OCD).

And then there's the neurologist, who gave her the primary SPD diagnosis, and yet that is the one we're not doing anything about.  I've been trying to get her evaluated by the school district, but because she's in a private school, it's not going anywhere.  The SPD is not enough to get services, but with the emotional problems and the ADHD, she definitely qualifies.  The problem, of course, is her "superior genius" IQ.  Since she's not struggling academically, the schools are not concerned.  So that leaves us trying to find private OT and social therapy, which insurance won't cover.

Is it any wonder I'm having trouble accepting Squirrel's diagnosis?  No one can seem to agree what it is!  Or which part of it warrants treatment.  And since we're dealing with both neurological issues and mental illness, she has to see several different doctors.  It is quickly becoming evident to me that the treatment of mental illness is not an exact science, but more of a science experiment--especially with children.  Try this drug; if it doesn't work, we'll up the dose.  If that doesn't work, we'll add this drug.  My poor Squirrel is on a roller coaster already--now we're introducing drugs whose side effects sometimes intensify the roller coaster.  She missed two pills in a row a few weeks ago, and sank into a dark depression/aggression like I'd never seen before in her.  It was scary to watch and walk through with her, but imagine how terrified she must have been to be so out of control of her own body!

Anyway, back to my thoughts about diagnoses and labels...Some people have questioned my judgement in pushing to have my children "labeled."  They don't understand why it's necessary.  They see my children, and think they're "fine."  Someone even said, "I was like that as a kid too, and I turned out fine."  Well, I was just like Squirrel as a kid, and I was far from fine.  I remember the struggles to understand why my body didn't feel right, and I especially remember the low self-esteem and self-hatred that plagued me as a teen.  I was an adult before I was diagnosed myself with an anxiety disorder and depression.  That's why I had Squirrel evaluated and diagnosed.  And it's a good thing I did!  I had no idea how much she was suffering!  I know how bad depression feels--you can't imagine the weight you carry unless you've experienced it yourself.  Now imagine being 9 years old and carrying that burden around.  It breaks my heart.

And Munchkin?  Well, he's in the special education program at school because of that diagnosis.  Like Squirrel, he has an extremely high IQ (not yet tested, because of his age, but evident all the same).  When I initially went to the school for an evaluation, they said he was too smart to qualify for any services.  When I went back six months later with a paper in hand that had a diagnosis written on it, the doors all opened to me.  He now receives services and specialized instruction to help him succeed.  Without that, I have no doubts that he'd be failing in Kindergarten.

Someone once told me, "If you don't label your child, the schools will.  And the labels they'll give them will be trouble-maker, wild child, unmotivated, lazy..."  So I'll take the labels, and all the stigma that goes with them, so that my children can get the help they need and succeed in life!

Friday, April 22, 2011

I Don't Need Your Drama! (I've Got Enough Of My Own...)

I find myself in a drama-filled situation this week.  It involves a co-worker, who also happens to be a parent of a child I work with.  This is always a tricky relationship.  While I make it a priority to keep the people I work with at a professional distance, I still want to be friendly. In other words, we won't be going out for drinks, but we can joke and laugh about things together at work!

On the other hand, if you are the parent of a child I work with,  I want to maintain even more of a professional distance, to be able to discuss your child's performance and behavior without it being awkward.  So what we're going for here is friendly but separate, and above all, professional.

The problem comes when the professionalism is one-sided.  Last week I had to tell this co-worker some things about her child that she did not want to hear.  Maybe this has brought about her change in behavior towards me this week.  Maybe it's something else entirely.  I don't now.

But it seems like she is just looking for a reason to be mad at me.  I'm a big girl...I can handle it.  What bothers me is that she will yell and rant at me (or about me) at one moment, then be overly friendly and try to make small talk the next.  And then she'll tell me that she's not upset with me for how I treated her.  (HUH?)  I find myself on edge around her, never knowing if she'll fly off the handle if I say the wrong thing, or if she'll take something I say and use it against me later.  And you know what?  I don't need that drama in my life right now.

So I am now being strictly professional with her.  I am treating our relationship as strictly teacher/parent.  It feels cold and I don't like it. I am a friendly person.  Conflict makes me sick to my stomach.  To purposely  hold myself back from someone is a choice that does not feel right to me.  It doesn't line up with what the Bible teaches.  And yet, it also feels like the right choice at this time.

After Munchkin was born, I spent the better part of a year in counseling, learning to overcome many of the problems arising from my troubled past.  Many good things came out of that year, but perhaps one of the best things for my emotional well-being was learning not to take on anyone else's drama.  I used to let everyone use me as their sounding board.  I use to try to keep the peace in all my relationships.  I used to feel constantly pulled to "take sides" in many conflicts.  I learned that it was a choice I was making, and to just say "No.  I'm not going to do that."  It took a long time, but was the best change I ever made in myself.

So, once again, I choose to preserve my sanity.  I choose to get rid of the stressful situations in my life that don't need to be there.  There is so much "drama" in my day to day living already--I don't need to add any more.  I've also noticed that when I refuse to take part in someone else's drama, it usually fizzles out--so I'm praying this fizzles soon.

Tuesday, April 19, 2011

Meltdowns and Dollars: The Price of Awareness

I had a brain freeze today.  I needed to run to Target to buy a birthday present after work.  Going anywhere with the children after a day of school and a couple hours at day care never, ever goes well.  And Eric was home  from work early today.  So I should have taken them home, then run back out by myself.  Except that we're already half-way to Target from work, so I asked them if they could handle a stop at the store, and they said off we went.

In all fairness (to them), they handled a stop at Target just fine. The problem was that someone cleared the Target shelves of anything that might make an appropriate gift for a one-year old.  So we had to make another stop.  My choices at this point were Walmart, or Toys R Us.  And I really hate our Walmart--it's crowded, and dirty, and the people who shop there have no manners.  So off we went to Toys R Us.

Bringing two children into Toys R Us is asking for trouble.  I don't care how well behaved your children are--that place will bring out the worst in any kid.   I told them both before we got out of the car that we were getting a present for the party, and nothing else.  We were not going to look at toys for them.  We were not going to stop and play with the display toys.  We were in a hurry and just needed one thing and then we were leaving.

They heard "blah blah blah blah TOYS blah blah blah blah."

Sure enough, Squirrel had to touch every.single.toy she saw.  She had to press each button, pull each lever, read each box.  She was aware that her behavior was making me crazy, so she kept trying to rush her brother along to catch up to me.  Which made him mad because A. she was telling him what to do; B. she wasn't being fair because she was touching things (he's all about the fairness these days); and C. he hates unexpected and uninvited touches of any kind.

He had noticed the Geo Tracks right away when we got in the store.  He's been telling me for weeks that he needs more Geo Tracks.  I have convinced him that he can have them for his birthday--which is in August.  Light years away in a Kindergartener's mind!

So by the time we finally found a suitable toy for our present, Munchkin was in meltdown mode.  And fixated on the Geo Tracks.  I failed to grab a cart when we came in (because we only needed one thing!) so I couldn't just pick him up and deposit him kicking and screaming into the back of it.  Which meant I had two choices: let him cry it out on the floor in the Fisher Price toy aisle, or scoop him up and carry him like a sack of potatoes over my shoulder.  Did I mention we were in a hurry?

Well, we made it to the check out line, with only one person ahead of us.  And as we're waiting, two people end up behind us.  Now, to my credit, I kept my cool this whole time.  I calmly told Squirrel to quit touching everything for the hundredth time while depositing Munchkin on the floor between my feet (so he couldn't bolt) and setting down our gift on the counter, and still managing to find my rewards card in my wallet and get ready to pay.  And, to their credit, the other customers were very kind and compassionate towards me and my kids (lots of "Oh, poor little guy" murmurings).  As far as meltdown experiences go, this one was not bad at all.  The cashier rang up my order and scanned my rewards card.  Then she asks:

"Would you like to donate a dollar to autism research?"

And I laughed.  I couldn't help it!  The irony of it was just too much!  She looked at me like I was nuts (which, a little bit, I was!) and said, "Oh, OK."  So of course I had to explain myself!  I said, "Here's a little autism research for you right now!  My son has autism, and is having a meltdown triggered by an overwhelmed sensory system and a tired little body.  And yes, I will donate a dollar."

I have no idea what the other people in line thought of me, because I then had to hand Squirrel our purchase, scoop up Munchkin again, and head out the door to resume our normal living.  But maybe, just maybe, they were encouraged to give a dollar too after what they had just witnessed.  Maybe, if nothing else, they felt compassion for me and for Munchkin and wanted to help us out in some way!

I mean, if that's not what Autism Awareness Month is all about, I don't know what is!

Monday, April 11, 2011

Birthday Love

Today, in honor of my beautiful Squirrel's birthday, I am going to tell you how I came to love her so much.

Once upon a time, nine short years ago, I gave birth to a tiny, delicate little girl.  It was, needless to say, love at first sight.  She was magnificent...perfect creamy complexion, reddish fuzz on her head (with long red wispy pieces at her neck--we called it the Friar Tuck 'do), grayish-blue eyes that took in everything, long LONG fingers with itty bitty nails.  However, this little bit of perfection took 18 1/2 hours of continuous hard labor to arrive, the last 3 hours of that being all pushing.  So mommy was a little tired and a lot sore and in no shape to care for a newborn, and I gladly let the nurse take her to the nursery for her first night.

Therefore, it was the next day before I really got to know my baby.  The nurse brought her in bright and early to breastfeed, and I gave it a go (and failed, but never fear--the nurse must have anticipated that, for she left a bottle for me to give her!)  Squirrel guzzled that bottle down, gave a mighty burp, and we leaned back together, mother and daughter, her resting on my chest as I studied her, contemplating this little being that was about to completely change my life.  Suddenly, Squirrel started to spit up, and I sat up with her, but something was wrong.  She was gagging and couldn't get anything out, and as I patted her back and tried to figure out what to do, she turned red and then blue in my arms.  I pounded the call button and remember yelling "Someone help me!  She's not breathing!"  As several nurses ran in the room, Squirrel vomited all over me and started crying.  The nurses started working over her, and then whisked her away, leaving me shaking and crying and not having a clue what was wrong.  Welcome to motherhood!

It's strange how love grows when you're pregnant.  I was in love with the idea of a baby before I ever became pregnant.  I knew Daddy and I would love our child immensely when we were blessed with one.  I fell more in love when I knew I was pregnant, and even more so when we saw her move on the ultrasound screen.  When we knew our baby was a "she," and started thinking about a name and envisioning what she might look like and who she would act like, I loved her fiercely and wanted nothing more than to protect and nurture her until she came out to meet us.  And when the time came for her to arrive, I already loved this child in a way I'd never experienced before.  I was so sure that I couldn't possibly love her more than at that time--that meeting her would just give that love a place to flow into.

But when she suddenly wasn't ok, and I didn't know what was going on, and my arms were aching for the child that was taken from me so quickly and without warning...At that moment, sitting in my room scared and all alone, I knew without a doubt that she was my whole life and that my heart would die a little if she wasn't ok.  This love was so intense, so all-consuming--it felt wonderful and crushing and overwhelming and magical all at the same time.

Squirrel was alright.  The doctor ran all kinds of tests on her, and checked her over for all kinds of infections and trauma from the long labor.  She stayed on a heart and lung monitor for 2 days, and though she had a few more breathing episodes, and her heartbeat dipped a few times, she was fine after 48 hours.  The doctor never found anything wrong with her--he said she just needed a little extra time to regulate her systems after birth.  She stayed in the hospital another 48 hours on an IV antibiotic to prevent infections, then came home when she was four days old.

Nine years have gone by since that day.  Squirrel is growing into a beautiful young woman.  She is smart and funny and so talented.  She is sarcastic and spunky and honest and faithful.  She speaks her mind and stands up for her friends and takes care of her brother.  She loves openly and accepts everyone.  She is amazing.  And you know what?  I love her even more today than I did that morning in the hospital room when I thought my heart would burst open.  I can't wait to see what this year of her life brings!

Friday, April 1, 2011

What I Am Aware Of

April is Autism Awareness Month.   I once read a funny shirt that said, "April is Autism Awareness Month.  Everyday is Autism Awareness Month in my house."  So true!  So, in honor of a whole month dedicated to teaching other people about, and increasing support and funding for, autism and its research, I have developed a list of things I am aware of since Autism has become a part of my life.

Ten Things I Am Aware Of:

10.   Children with Autism are often very smart.  Much smarter than their moms and dads.  Which is good, because when I can't figure out how in the world the Lego Thomas Deluxe Play Set goes back together after we've lost the instructions, Munchkin can.

9.     Children with Autism obsess about things.  Like Thomas the Tank Engine, and Toy Story, and tracks of all kinds.  But also about fires, and what might catch on fire, and how many ways we might get hurt in a fire.

8.     Children with Autism don't always make eye contact.  Munchkin told me it's too hard to hear me if he looks at my eyes.  Like many kids, he hyper-focuses on something, and his senses don't always work together.  So he has to focus on one sense (hearing) and block out the others (sight) to really listen.

7.     Children with Autism are easily overwhelmed.  So when Munchkin drops to the floor in the aisle at Target and starts wailing, he's not throwing a fit because I just told him "No, you can't have a Thomas train."  Well, not JUST because of that.  Though that may be what brought the meltdown on, you didn't notice the hundreds of other things assaulting his system since we walked through the door.  But he couldn't help but notice them, and the fact that he held it together through most of the store is a huge success.

6.     Parents of children with autism do not measure success by baby books or doctor's milestones.  Success is when your child finally gives up pull-ups completely, even if he's five years old.  Or when your child writes his name for the first time after two years of trying.  Firsts are different for us, but celebrated all the more for their individual qualities.

5.     Children with Autism--like all children--just want to fit in.  They just want to have a friend or two that they can play with. They want to be included in outings and parties and such.  They want to be allowed to join in the game with the other kids.  Teach your children to understand and include children who are different.  Please.

4.    Children with Autism have an amazing way of seeing the world.  They look at the individual parts of things, while most of us focus on the whole picture.  Munchkin has shown us some beautiful things that we didn't notice.  Like the way normal things have a rainbow around them when viewed through 3D glasses.  And how you can see through certain leaves if you hold them up to the sun.  And how the water fountain sounds like music when you listen to it.

3.     Finding out your child has Autism is not the end of the world.  We are so fortunate that Munchkin's form of Autism is a very high-functioning variety.  He is verbal, he is able to feed himself and do many self-care tasks alone.  He can go to school.  He can show love and compassion and empathy.  And one day, if he wants to, he can get married and have children and hold a job (probably in some nerdy, genius field!)  I have met many people who's children don't function at this level, and they are my heroes for what they go through every day of their lives.

2.     A cure for Autism is a very real possibility.  Researchers are getting closer and closer every year to figuring out the genetics involved.  There's even talk that they may be able to test for Autism genetic traits in the womb or at birth, which would allow intervention and therapy to start before the signs of Autism even show themselves.  This is why I support and participate in Autism Research.

1.    Autism has brought blessings to my life that I may never have experienced without it.  New friends.  More awareness about other disabilities.  A refreshed desire (and the means) to help as many people as I can.  A deeper understanding of pain and of joy.  The opportunity to find my voice in writing again.  An understanding that my kids are true gifts from God.  And the knowledge that His love is more than enough for anything life brings us.