Everybody’s boy is starting “school” on Monday.  He’s been selected to participate in the TEACCH summer training program and will attend M-F from 9-1:30, for the entire month of July.

Time for Debby to figure out who the hell she is without Peter.  I’m grown quite accustomed to just being Peter’s Mommy.  I just don’t know how to be “me” without “him”.  Or if I’ll like me without him.

I’m pretty exhausted tonight, lots of big and exciting changes going on around here, more on those later.  Suffice to say, there is plenty to keep a lost soul like myself busy while my boy is growing and changing the world, one giggle at a time.

I’m not usually prone to romantic gushy-ness.  There just isn’t time for such trivial things in life these days, but as I sit here, listening to one very awake/yet delirious miracle child bouncing around upstairs, I thought one of those “look how far we’ve come” post might be relevant.

Four years ago, in the scorching Florida sun, at a  now defunct bed and breakfast in St. Augustine we officially began this journey – about 30 years younger physically – yet completely unaware of what we could and would accomplish.

Almost immediately you were met with the challenge of caring for a very sick wife carrying a high-risk pregnancy, working long hours in the hot sun for pennies, keeping house, cooking, and going to school every evening to make a better life for your family.  You accepted everything in stride, and perservered, with a calm assurance that it really would all be okay.  Did I ever properly thank you for that, my dear husband?  I don’t even know how I would begin.

And then there was Peter Alexander.  Born a month early – so small, so wonderous, and so…what was the word we used before we “knew”?…ah yes, spirited.   And still, I was so sick, so absorbed in my “important” work, and so insecure as a mother.  So you stepped up, you were right there with me for 3 a.m. feedings, you dressed him in the morning and took him to Mama/Papa’s so I could sleep in a few extra minutes, you just had this way with him.  I suppose he can sense that about you even now.

Then we had the move, something we knew was for the best, but still a major upheaval and I know how much roots mean to you.  You uprooted yourself from your friends, your work, the home you’d known for so very long and entertained my notion to start over in a brand new town, on not much more than a wing and a prayer.  It was the right thing, but it has been incredibly hard.  You’re working from home, my new “role” as…what ever the hell I am…financial worries (and the stress of being our sole provider), setting down new roots, new routines, starting over.  Once again, you took the the more difficult road, to make a better life for us.  Once again, I have no words to thank you.

Then there was (and is) Autism.  It knocked the wind out of us and everything in our little world was turned upside down.  Yet in many ways, it was finally put into perspective.  Your love for Peter has never waivered.  Your gentle patience tested at times, but your gift of silent perserverence shines through.

So, as we arrive at June 18, 2009, and celebrate four years of marriage.  I look back on those two “kids” who really had no idea what they were getting themselves into on that day – but who believed that love conquered all – and looked to the future with light and ambition in our eyes.

We’ve been dealt a lifetime of trials, and a lifetime of unexpected joys in our journey together thus far.  I know that this past year in particular has been a great challenge and it has not been our best.  Yet in some ways, I think that the more we have to fight everyone else, the more you and I become WE.

My biggest fear used to be that you’d leave me, or that you’d merely stay with me due to circumstance.  Now my biggest fear is that something out of our control will take us apart from each other.  I know that we don’t have much time for each other these days, and that often when we do, we are both so mentally exhausted we just need individual time – but I want you to know UNEQUIVOCALLY that I love you more today than I did yesterday, and I love our life (as convoluted as it may be at times) more now than I could’ve ever imagined four years ago.

In the meantime, I’ll try not to micro-manage every moment of life, and learn from you how to live in the moment more.  And, if you’re so inclined, maybe you could take the recycling out or load the dishwasher once in a while. 

Most importantly though, I promise to appreciate you, and our perfectly flawed little life (and not sweat the small stuff) because in the grand scheme of things, we are truly blessed beyond belief.

Happy 4th Anniversary, Gustavo.  I wish for at least 66 more (maybe on that one we’ll finally clean out the piggy bank and make it to Paris)!

With all my love,
Debby

*North Carolina legislators are working to create a solvent State budget.  Though, instead of cutting true waste or increasing taxes, they have proposed cuts to Medicaid and CAP programs that would leave thousands of children (and adults) without access to vital speech, occupational and physical therapies as well as thousands of therapists un or  under-employed.

Cutting Vital Services is Not the Answer to Economic Stability

June 15, 2009

In our current economic climate, it is commendable for our elected officials to seek to cut waste wherever possible in our state’s budget. However, the current budget cuts proposed by NC legislators, contradict their mission of creating economic stability.

Cuts to health and human services alone include a proposal to remove coverage of vital rehabilitation therapies for individuals with developmental disabilities. Besides being harmful to North Carolinians currently needing these services, such cuts would also leave thousands of our state’s most talented and valuable professionals unemployed and forced to seek work (and pay taxes) in other states.

Perhaps the most egregious repercussions of the proposed cuts are the long term effects on our state’s economy. Let’s say we save $15M by cutting speech, occupational and physical therapies from the Medicaid budget this year. The cost of providing for these children with disabilities in the future, when they haven’t had the opportunity to grow to be as independent as possible, will be ten-fold. Thousands of individuals with disabilities, who have the potential to lead independent and fulfilling lives with the proper intervention will be forced into institutions when their caregivers can no longer manage their needs.

Further, cutting CAP waiver funding prolongs an already criminal waitlist for families, who are forced into “self-imposed poverty” to qualify for Medicaid services. These are middle class parents and professionals who want to provide for their families, but can’t make enough to privately pay for lifesaving therapies. Why not expand CAP funding, decreasing the wait list from an average of 5-7 years, and help us get back to work and become financially solvent? Instead, how about writing a piece of legislation that requires our private insurance companies to cover services for developmental disabilities like Autism?

Finally, let’s not forget the enormous impact of the comparatively small pot of funding that helps non-profit organizations create miracles each day for families of special needs individuals. Organizations such as First In Families of North Carolina work within the infrastructure of the community to stretch the small amount of state dollars it receives, adding 50 cents to each state dollar allocated. FIF is an invaluable resource for North Carolina’s most vulnerable citizens.

These economic times do require tightening of the belt, and it’s prudent for our State to set a precedent of responsible consumerism, but that can be done without cutting jobs, life-saving health and human services, and leaving our future generations with enormous debt and responsibility.

Having words and communicating are very different.  Peter’s had “words” for over a year now, and each and every one of them is a gift in it’s own right.  Many children with Autism don’t ever speak, I’ve never taken for granted how blessed we are.

I talk a lot about our wonderful therapists.  Each of them is Peter’s personal cheerleader in many ways.  Each of them has changed his life, and ours through him.  If it takes a village; Peter has a nation.

Tomorrow we say good-bye to Peter’s speech therapist, Stacy.  She and her fiancee are off to Maine to touch many more lives.  We’ve known this day was coming since she began working with Peter in April of 2008.  What we didn’t know was how hard it would be to let her go.

Stacy has worked diligently with Peter and our family over the past 14 months.  She is a bright and welcome presence in our home.  Peter adores her, and so do we.  She’s not only his teacher and his advocate, she is also a dear friend.

I find it almost karmic that yesterday Peter and I had our very first conversation.  It’s not that for some time he hasn’t been using his words to communicate, but over the past few weeks he’s had an incredible explosion of both receptive and expressive language.  He’s putting together sentences and answering questions with more than a yes or no (which even 3 months ago was unimaginable).

I had taken Peter to OT yesterday, to see one of our other angels, Amy.  I’m trying to snip the apron strings a little bit and leave him once in a while so that he won’t be too shell shocked once he starts the summer TEACCHing program next month (aren’t you proud of me Beth and Missy?).

So, as usual, during bathtime I talked to Peter about his day.  Though I hadn’t been there for a part of it so that was unique.  I asked him what he did with Amy, fully not expecting a response, and certainly unaware that this particular interaction was going to change my life forever.  Isn’t it funny how life’s greatest moments sneak up on you like that?  How a seemingly typical Tuesday evening can be the best day of the year?

My previously non-communicative son looked me in the eye and answered me.  “Peter in the rice room.”  I almost fell backwards.  I pushed, “Peter, you played in the rice room with Amy today?”  He said, “Yes.”

And so it went like this;

Me:  “What else did you do with Amy?”
Peter:  “Treasure hunt, kitchen”
Me:  “You went on a treasure hunt in the kitchen?”
Peter:  “Yes”
Me:  “What did you find?”
Peter:  “Chocolate Ice Cream Cone”, starts playing with bath toys “Nemo is orange, Nemo is Orange, NEMO IS ORANGE (this means “I can’t find Nemo, Mommy.  He’s orange by the way.  Oh, and Mommy did you know that Nemo is Orange and I cannot find him?” and he’s done with our conversation).
Me:  “Do you love Amy?”
Peter:  “Yes.  What happened to Nemo?  NEMO IS ORANGE!”

And that was it.  My son and I had a conversation about his day.  He connected with me, he understood me, he recalled and recounted events, and he shared with me…because he wanted to.  In the Autism world, that’s what we call a miracle.

Tonight I had a similar discussion about his Giggle Friends class.  It was no less miraculous.  I can’t imagine that I’ll ever stop tearing up in wonder when I think about the gravity of what happened yesterday.

Stacy, you’ve done some pretty amazing work.  It’s such a gift that you are here to see the fruits of your tireless efforts.  We can never thank you enough, and while we are sad to say farewell, we know that there are lots of “Everybody’s Boys” in Maine that need you.