The boy  has been accepted into TEACCH’s summer program.  He’ll be going five half-days a week for an entire month.   We’re incredibly proud and thrilled that he’s been chosen to be one of five children who has the opportunity to participate in this intensive program, and will provide lots of hands on experience for early childhood professionals participating in the training.

Once again, we have been incredibly blessed, by an unexpected opportunity.

I can’t help but to feel extraordinarily lucky, and perhaps that some sort of “higher power” is looking after our sweet boy.  I’ve been skeptical of the whole god thing for many years, but you have to wonder…when miracles are happening before your eyes every day, every moment practically…maybe?

Of course, we have the most amazing support system.  The tireless work and devotion of Mama and Papa (Gus’ parents), our wonderful therapists (Stacy, Amy, Beth and Missy), Peter’s favorite college student Miss Elizabeth, our pediatrician Dr. Gush (and Jon, our Medicaid guru) and certainly our beloved case worker Alexa.  The love and support we receive from Peter’s “Titi” Lisandra, Uncle Ian, Cousin Gray, Grammie (My mom), and more friends near and far than we could possibly mention helps us to never feel helpless or alone.

I would be remiss if I didn’t mention the work that Peter himself does.  If he weren’t so incredibly driven to succeed – I’m sure our story would not be so happy.

I owe a proper entry in the near future.  I’ve been under the weather the past few weeks and just emerging as human again today.  I just wanted to post to let our followers know the wonderful news, and to confirm that I am indeed still “here” (though barely, at times).

Congratulations to one and all for almost officially surviving February.

I was talking with a fellow Autism mommy recently, and it became apparent to me what incredible standards we hold ourselves to.  I think mothers in general do this, but I can only and especially, speak for those of us in the Autism realm.  There are so many different schools of thought, different therapy options, diets, testing, speculations on causes…it’s absolutely petrifying when you have a moment to sit down and let it all soak in.  You end up self-interrogating.  Are we making the right choices?  Are we doing enough?  Too much?  Do we have the right balance of “things”?  What should we feed our child, what tests should we run?  What caused this, what didn’t?  Should we have more children or not?

It’s fortunate that we don’t have that much time to really sit down and think about these things, because undoubtedly that would breed a colony of insane, and subsequently ineffectual, parents.

As mothers, we seem to be our own worst critics.  We believe that every other mom has it all figured out.  We feel inept, lost, like we are the only ones struggling – too scared to reach out and ask for a hand-up.  Forever searching for a crypt sheet that ultimately doesn’t exist.

I’m not sure that anyone who has ever spent more than an hour with me could possibly believe that I’ve got all the answers.  That I’m holding it together or that in any way I’ve got the golden ticket to surviving this epic adventure.

But, just in case, I thought I’d tell the world just how amazingly awesome I really am.

• I’m on anti-depressants and anti-anxiety medication daily.  Otherwise, the good folks at UNC would keep a bed in the psych ward open for me.
• I haven’t read anything besides US Weekly and CNN.com in a year.
• I bribe my son with Diet Coke and cookies just to make it through the grocery store.
• A successful and exciting Saturday evening is having no dishes in the sink.
• I have started and quit smoking at least 10 times in the past year.
• I scrub poop off the wall at least once a week.
• There are days that the only thing I “eat” is a protein shake.
• I don’t wear bandanas because they are trendy, I wear them because I don’t have time to fix my hair.
• Netflix and Chinese food keep my marriage together.
• Sometimes I sneak into Peter’s room in the middle of the night and stare at him and cry, apologizing for the million ways I’ve failed him that day.
• My inlaws have to give us money to help us make rent.
• I have lived here for a year and I have absolutely NO roots.
• The bulk of my social interaction is done via Facebook, text messaging and with Peter’s (wonderful) therapists.
• I’ve lost 50 pounds since we moved here, because I have no desire to eat.
• This blog is my solace and my nirvana.
• I know every Sesame Street song ever recorded.
• If I cook, we’re either broke, starving or someone is in the hospital.
• I have gone weeks without driving, and days without leaving my home.
• I have at least 10 articles on Autism waiting to be read but can’t even bring myself to start.
• I feel guilty every minute that I am not actively engaging Peter.
• I purposely avoid anything to do with typically developing children, and am floored when I actually see a child Peter’s age interacting “appropriately”.
• I wonder what I might’ve “done” to cause Autism.
• I feel guilty for working 60 hours a week for the first two years of Peter’s life.
• I feel guilty for missing my work.
• I dropped out of college with one semester left to complete my BS in Communications, because I was so overwhelmed by Peter’s diagnosis.
• I have, regretably, on more than one occasion not spoken up when someone has said something ignorant about my child’s behavior.
• I spend my evenings filing SSI, Medicaid, Medical Records, etc. in huge binders – but more often than not I don’t really even know what I am doing with respect to most of these things.

I could easily go on and on…those are just the first 30 odd things that came to mind.  The thing is, I am sure that upon first glance it might seem like I have it together.  I put on my game face most days and work hard.

The truth is though, anything that I have gotten right has been through shear luck, and the hard work of not only myself but my family, friends and therapists.  Most importantly, the one and only thing that makes me look good is Peter himself.  If he wasn’t such an amazing spirit, an incredible “rock star” in every sense of the analogy.  It would be remarkable how transparent my “real” life would be.

I have to giggle. When I met my dear friend Kate some seven years ago she told me that she worked in non-profit as a “Director of Respite”. She doesn’t know this, well she will now, but at the ripe young age of 23 I barely knew what non-profit meant. I thought it meant you worked for free.  Later I found out that was pretty accurate actually, but that’s a story for a whole ‘nother blog. Innocently enough, I had also never heard the term respite. Before the days of Google, I looked it up in the dictionary.

In case 23 year old Debby is reading:

res-pite
–noun
1. a delay or cessation for a time, esp. of anything distressing or trying; an interval of relief: to toil without respite.
2. temporary suspension of the execution of a person condemned to death; reprieve.
–verb (used with object)
3. to relieve temporarily, esp. from anything distressing or trying; give an interval of relief from.
4. to grant delay in the carrying out of (a punishment, obligation, etc.).

I assumed, since she worked “for free” and “with kids” that this meant she was probably “director” of something along the lines of the third definition. I wasn’t quite sure what she was relieving people from, or why they needed relieving, and what could possibly be so distressing or trying about children.

Oh sweet, hayseed, blindly ignorant, YOUNG Debby.  You are sickeningly sanguine in your blatant naivete!

Damn, I miss that girl.

Kate has taught me many things about life, children, marriage, friendship and growing up since then.  I’m sure she hopes that someday I’ll actually have something witty and helpful to pass along to her in return; but I’m afraid she shouldn’t hold her breath.

At the time, I certainly never imagined the impact that the word respite would have on my life.  Or how I would someday understand fully its intrinsic value and rue its scarcity.

I still don’t understand how I will ever reach the point where I feel comfortable leaving my boy with someone other than immediate family and simultaneously enjoy myself.   However, I’m beginning to recognize that I (we) will undoubtedly burn out if we don’t take a step back to recharge and reconnect.  That it’s impossible to continue to give 100% when your own resources are depleted.  With that being said, I’m going to sit down this week and finalize my application for a respite worker.

You know what they say – if Mama ain’t happy, ain’t nobody happy.  C’est vraie?

this is so hard, so overwhelming, so beyond comprehension…that I look back on the day and wonder how did I survive? How did my marriage survive? And if it was this taxing, this shattering for us, how was it for Peter?

Enough with the platitudes about how wonderfully gifted our life is. It’s not that it isn’t. It’s not that in any way I appreciate every miraculous moment less, or that I would change it for anything. It’s just that sometimes it’s so difficult. Sometimes Autism quite frankly SUCKS!

We’re sick this week. He has an ear infection. I have, well god knows what I have because it’s not like I could go to the doctor. He hasn’t been able to successfully complete one therapy session all week. The sure-fire make him laugh things aren’t working. He’s beyond consolable. The tantrums are unprecedented. And yes, I know that all two year olds have tantrums, but do they span an hour (or more)? Do parents have to physically restrain their child from harming themselves or others? Maybe? I’m not up-to-speed on typically developing children.

I believe that the issues are exacerbated due to him not feeling well. He’s not usually like this. I believe it will get better.

But even on the great days. The lack of functional communication, the over-stimulation to his sensory system, these things cause him great frustration. As a mother, it’s heartbreaking to know that you are helpless in consoling your child. A child with Autism doesn’t want to be hugged and rocked or sung to. Those things just add insult to injury.

We’re going to go have a bath, a typically wonderful time of day, and I am looking forward to our special Mommy and Boy bonding time.

Back to regularly scheduled programming soon, promise.