A little about me and my issues

Lately, my anxiety has skyrocketed through the roof.  I've tried using biofeedback to relax my tense body.  I've adde another SSRI to the one I already take.  Last night I even took half a Xanax.  Right now I'm supposed to be resting but I keep hearing Rainbow cry.  I know hubby is doing everything he can think of to help her, but she just keeps crying. And I catch myself laying here, my shoulders getting tenser and tenser! holding my breath! wanting to run out there to fix it.  I hear Sunshine whining because he can't stand her crying and he wants the same amount of attention we seemingly endlessly give her.

He thinks we don't love him anymore. That our love for him has been transferred to her.  And it kills me.  I see him and he's crushed. I know this is jealousy over a new sibling. I have nothing to compare it to. I'm an only child.  I wonder if this is why Sunshine's sensory problems have suddenly magnified. Clothing that never bothered him before is suddenly too rough and hurts him.  His bed is too rough. He's developed a terror of thunderstorms.  And volcanoes.  He has horrible nightmares that haunt him about me trying to throw him into a volcano.  "It's too hot, Mommy! It burns me! Please don't throw me in the volcano again!" he pleads with me.  I have to wonder what he thinks of me to believe me capable of doing something so horrendous to him.  No matter how I try to explain it was just a bad dream and not a memory of something that really happened, he keeps begging me not to do it again.

I know how stressful this is for me watching him go through this.  How much worse it must be for him to live it? Times like this I wonder if this is normal four (almost five-year-old) thinking and behavior or is it made worse by autism? Times like this I hate autism.  I love my son but I hate what makes life so damned difficult for him.

Strangers in a Strange Land

I'm sitting here at the Kennedy Krieger Institute's Center for Autism and Related Disorders (CARD Center).  I'm in the waiting room while Sunshine is off with two of the doctors hopefully having fun and being evaluated.  One would think that being surrounded by children having tantrums and meltdowns and who have impulse-control problems, who are would be unnerving, but the longer I'm here, the more I find myself relaxing. And smiling.  There is something soothing about being around other kids whose behavior, speech, and mannerisms are so very like my son's.  It's a welcome change not feeling the constant urge to protect him from disapproving glares. To explain away his weird mannerisms. To shush him so that he's not disturbing others.  

Here, Sunshine can be his strange self without the pressure to act normal.  This is our third visit here and it's beginning to feel old hat.  I can spot the "first-timers".  The parents and caregivers who are still uneasy and feel the need to apologize for their child's lack of social skills.  They're the ones glancing around and quietly redirecting their oblivious kids from their awkward interactions with others.  Guiding their children out of other peoples' personal spaces.

It's refreshing to be in my element and to be in a position to offer a kind, reassuring word to these parents who are stressed out and uncomfortable and wary of other adults' reactions to their sweet babies.  To tell them, "I get it.  I get and accept your kid spinning and screeching and speaking in odd ways."  We're in this together.  You're in good hands here.  Your loved one is in good hands here.  For once, Sunshine and I are in our element with others just like us.  Strangers in a strange land named Autism.

Little update

Well, it hasn't been all bad.  It turned out Sunshine wasn't spitting so much as blowing raspberries at the other kids to get their attention.  Still, life with him is never dull.  He's had some days where he is spot on and gets a perfect behavior report.  Then other days....well, let's just say he has kissed a girl (and probably liked it), shoved another kid (because he wanted to be his friend), and chewed on another kid's shirt (I can only imagine what that poor kid must have been thinking).  

Last Friday, Sunshine had a panic attack almost as soon  as he got to school.  His teacher called me apologetically around 9:30 to say she had only been able to calm him to the point of sobbing that he was really sad and wanted his Gramma. The principal managed to get out of him that he was afraid of thunderstorms.  It wasn't until Sunday when I was driving to the north end of town (about a 25 minute drive) with both kids in tow and he had another panic attack that I was able to piece together what had triggered Friday's freak out.  

When he was at the summer program at the local university that I mentioned before! the classroom was set up much like his current classroom with the entire back wall being windows.  One morning, there was a particularly bad thunderstorm that hit while he was there and it scared him to pieces.  This was right  around the time he started developing a fear of storms anyway.  Well, apparently this past Friday, he noticed the sun disappear behind some clouds and it triggered his memory of the storm this summer when it got suddenly dark.  Once he began to panic, it just snowballed and he began thinking about everything else that scared him about the summer program including feeling lost because they went for a walk to the garden (which was outside the Child Development Center that we were initially assured the kids were never allowed outside the gates) and being afraid that me and his Gramma had abandoned him each day.  It doesn't help that Gramma is no longer able to stay with him at school.

The good news is that I was talking to my therapist yesterday about his anxiety and she assured me that what I've been doing instinctually is exactly what is recommended to help people snap out of a panic attack.

Hopes, Fears, and Anxieties

Sunshine started his first day of mainstream Pre-K today and I think I might be just a bit more nervous than he is.  The experiences he had at the summer program we had him in showed us unforeseen problem areas.  I still didn't think some of them would be a big issue this year at "regular school" until I started filling out the forms and permission slips I got at the Open House last Thursday.  One of them is just a tiny slip of paper authorizing Sunshine to walk with his class off school grounds to places of interest in the town.  Essentially they are mini field trips.  I remember going on field trips to the library, the hospital, and the post office when I was in Kindergarten (which is essentially Pre-K now) and I loved it.  Had we not had the experiences this summer, I would expect Sunshine to love them too but now I know better.

It took months for him to stop having nightmares and panic attacks about "getting lost" after we adjusted his schedule and he no longer walked anywhere outside the center with his summer class.  I'm so torn.  I don't want to hinder his growth and development.  I know stretching the limits of his boundaries is a good thing to some extent.  But where do we draw the line?  When does it go from being a positive, beneficial experience to being traumatic and causing harm?  And how and when did I become a helicopter parent?  Does it qualify as helicopter parenting if your kid has special needs?  Have I pushed him into "special snowflake" status?

It's the first day of school and I've already emailed his teacher twice.  TWICE!  And it's just after noon.  My kid has already come home with a "bad report."   I'm almost ashamed (ok, I'm REALLY ashamed) to admit that my kid was the one spitting at the girls in gym.  MY KID was the problem child who refused to cooperate during class and do what he was supposed to do.  I'm just beside myself.  How the hell do you control your child's behavior when you can't be there?  I really don't believe that punishments for behavior that occurred hours ago is effective, but I can't just let him believe that we're okay with his actions.

A part of me wants to come down on him and come down hard for this crap.  He KNOWS spitting is wrong and rude and disgusting. I talked to him briefly on the phone and tried to get him to explain to me why he acted the way he did, but I don't think he understands the question.  What's more, I'm afraid the answer won't be something we can fix - like he was on sensory overload - and instead it's simply because he's being defiant because he doesn't want to follow the rules.  I can't begin to tell you the number of times we have told him that life isn't always fair and you often have to do things you don't want to do because that's part of being a family or part of being a member of society.  We may not like them, but the rules are there for a reason.  So how do you get a smart, autistic kid to understand and and accept this?

Any ideas?

So Many Rainbows

This year - 2013 - is turning out to be such a happy year for rainbows in my loss group.  It's a weird kind of happy though because when you get pregnant again after a miscarriage, a part of you still mourns the baby that was while another part of you is excited and happy for the baby to come.

Certain dates are forever etched in your mind.  The date you found out you were pregnant, your due date, the day you learned about your loss, and sometimes the date of a D&C.  Then you have a whole new set of dates for the new baby and you don't know what to do when those other dates come around.  Do you openly mourn for the one you lost?  Then you're judged for being morbid or depressed and you're not a thankful pregnant woman (because God forbid you not be a happy, bubbly, shiny preggo!).  On the other hand, if you don't somehow acknowledge or feel a twinge of sadness at the passing of these dates, you feel like a monster - I mean, who just acts like everything is fine on the anniversary of losing a child?  It's confusing but one of the other moms posted a thought on Facebook the other day that the rest of us really liked:

"I believe that this baby was meant to be part of my life and

the other baby was meant to be part of my story."

So today I'm going to celebrate the positive - the rainbows meant to be part of our lives.  Today, the 10th rainbow in our little group will be born. The first rainbow to be born after my Rainbow came into my arms.  I can't wait to meet her (or at least see her picture)!  Happy Birthday, little girl :)

The Decision to Medicate

As a parent, there are so many tough decisions to make.  So many ways you can possibly screw up your kid(s).  There's a lot of backlash against the medical community, the pharmaceutical industry, and parents of difficult children.  And like most parents, until we were parents ourselves, Hubby and I were Judgy McJudgersons when it came to children being given drugs to alter their behavior.  I'm sure you know what I'm talking about.  Maybe you've even had the thoughts a time or two yourself.

How can those parents live with themselves knowing they're putting toxic substances in their kid's bodies?  Their kid wouldn't need the drugs if the parents would just parent.  Kids just need to run and play and work off all that excess energy.  I don't see a real problem there.  The kid is just a brat who needs discipline (or a good spanking)!

And to all the people (parents AND children) I've judged, I'm so SO sorry.  Just know that Karma - bitch that she is - has bitten us in the ass and taught us a valuable lesson.  Unless you're living it, don't be so damned quick to judge or even have the arrogance to assume you could do better.  Maybe you could, but most likely not and it doesn't matter anyway.  That person you're so busy sizing up is doing the best he or she can.

It's with great humility and even greater thought and deliberation that Hubs and I made the decision to ask Sunshine's neurodevelopmental pediatrician for medication to help him sleep and to help with his anxiety.  For all of the progress he's made (and we're talking HUGE strides here), we've watched his overall level of anxiety ratchet up to the point that multiple daily meltdowns often resulting in him physically hurting himself and others were becoming the norm.  When he gets to that point, there is no reasoning with him and often trying to head off the meltdowns results in a 50/50 chance that it will just bring it on faster and make it last longer.

One of the factors that we took into consideration when deciding to go the medication route was knowing that sustained high levels of cortisol - the fight or flight hormone created when a person is in a state of anxiety - can cause major health problems.  This is a physiological problem and not one that can be solved by ABA or CBT.

If you're the parent of a special-needs kid and you're on the fence about trying medication, just know that you're not alone.  There are plenty of us out there who understand and those who don't aren't worth your time.

My, How Life Has Changed

I took a several-year hiatus from writing this blog.  In the interim I wrote posts on my LiveJournal account and kept most of them locked down.  Now, it feels like it's the right time to do some writing and put it out there for the world to see.  Who knows....maybe someone can find some peace from me sharing my life and know they're not alone.

First, I've renamed my blog after my kids.  My 4.5-year-old son I've always called "Sunshine." Even when he struggles with being autistic in this crazy world and lashes out...underneath all the anxiety is a sunny disposition, a wicked sense of humor, and intelligence beyond his years.  I've taken to calling my infant daughter (10 weeks today!) "Rainbow" because she is my rainbow baby.  For those not in the know, a rainbow baby is one born after the loss of a child - miscarriage, stillbirth, and infant loss.

There's really too much to write it all down today, but I will begin sharing parts of our lives, how we deal with it - the good and the bad, and our joys and triumphs.  When we started out on this journey in 2006 (when we began trying to conceive - TTC), we had no clue what we were in for.  There are days when it honestly feels too hard to keep going but the future is uncertain and if there's one thing Hubby and I have, it's perseverance (and a lot of love).