Second Graders, Here I Come

In less than two hours, I will be sitting in front of a group of second-graders at my children's school.

I will be talking to them about autism and, in particular, about Daniel. How do you talk about Daniel without talking about autism?

I will be attempting to explain to these seven- and eight-year-olds why they should see my son as different, and yet so much the same -- as in need of some assistance, and, yet, deserving of acceptance as an equal.

No small task.

I am excited and nervous.

Yes, they are "just" second-graders.

But they are my son's peers. They are the kiddos who see him every day.

They are the children who either will or won't ask him to sit with them in the cafeteria.

They are the children who either will or won't stand up for him when someone is treating him as "less than."

They are children who are currently forming their opinions, based on their experiences with Daniel, on what it means to be a friend to somebody who can't return friendship in traditional ways.

They are the children who have the power to educate not only their peers, but their families as well.

Let's hope I do right by my son today. I owe it to him.

Breaking the Seal

Hope springs eternal in the human breast;`
Man never Is, but always To be blest:
The soul, uneasy and confin'd from home,
Rests and expatiates in a life to come.

--Alexander Pope,
An Essay on Man, Epistle I, 1733

Hope springs eternal ....

But does it?

For those of us who have brought a child into this world, so filled with excitement and plans and dreams,

so filled with hope .....

Only to hear the labels,

to see the signs,

to watch as our children's peers do all the things we thought our sons and daughters would do ....

somewhere along the journey the word "hope" takes on a new meaning,

if it doesn't leave our vocabulary altogether.

I do not wish to speak for anyone other than myself.

Because even though the path each special-needs-parent travels is sure to intersect with the roads of others ....

even though, if we are lucky, we find cherished friendships along the journey with parents who understand because they live it ....

Still, at the end of the day, we process our pain alone.

And we handle it, or fail to handle, on our own.

So, I speak only for myself when I say that I have had difficulty with hope the past few years. Other special needs parents, without a doubt, have had a much stronger handle on hope than have I.

I had it once. Four years ago, I moved myself and my kids 350 miles away from the city where they were born. I did it so Daniel could go to a school that offered special services to children with autism. I counted down the days until my husband would be able to be with us all the time, and I did my best to make two little children happy, even though I was filled with nervousness and fear and worry.

I still had hope then, even though I was anxious, even though my dreams for my son already were considerably altered from what they were when Daniel was born.

I had hope that Daniel would get the help he needed at his new school, that he would be able to talk to me.

That is really all I wanted: for my son to be able to talk to me.

Screw college degrees and baseball games.
Who gave a crap whether he ever read Shakespeare or learned the quadratic formula.
I just wanted to hear his voice.

It didn't happen.

And what happened instead? What I believed in -- what I based my life on -- turned out to be untrue. I had an up-close view of viciousness in its worst form, and I experienced a difficult lesson in how little words actually mean when the people who say them aren't willing to take actions to back them up.

And my son still can't talk.

Somewhere along the way, my hope vanished.

It poured out of me along with so many other things ... things that are impossible to retrieve.

But, hope, dare I say it, really does spring eternal -- at least when it comes to your child.

For a moment last week, someone gave me a little hope.

A speech therapist, one whom I respect tremendously, evaluated my son. She already knew him because he previously received services at her clinic. She didn't work with him individually but she consulted. She is in great demand, you see -- she is that good.

She is awesome.

I asked her to do an evaluation that I could present to our school district (because I am disappointed at the level of services currently being offered to my son, but that is a story for another post).

Her special area of expertise is PROMPT therapy, which is designed to help kids, like Daniel, with apraxia (which, when added to autism is such a one-two punch in the gut).

After the evaluation, she told me how well Daniel responded to her PROMPT techniques, much better than the last time when he was in her clinic more than a year ago.

I said something about Daniel already being eight-years-old.

She stopped me, and she took me into a private room, and she said:

This kid can be talking.

This was last week, and those words brought tears to me eyes when I heard them -- just a few because I was in public, after all.

But, now, as I type this, there is a torrential downpour.

So many times I have put dreams on a shelf.

So many times I have looked into my son's eyes, so thankful that he shows love and affection for me in ways I cannot doubt, but wanting, wanting, wanting ....

more.

It is terrifying ... this idea of breaking the seal on my boxes of stored-away hope.

My heart has been broken so many times, in so many ways -- ways far more painful than anything autism could ever accomplish, which is saying something. And there are scars on my heart that will never heal, not completely.

But is there a chance that some day I still might hear my son's voice?

Do I dare to hope?

How can I not.

My heart still beats.
I still dream.
And I am always a mother.

Sometimes a friend who has been there, because she lives it, can make a point in such a way that I want to shout praise from the rooftops.

So here is the blogosphere equivalent: a link to a post on her blog.

It's the Little Things

I hear ya, Deb.
I can count the number of times that has happened to me with, well, one finger. (Not the autism-related stress in public part. That is my life. But the stranger-approaching-with-a-kind-bit-of-encouragement part.)

I will never forget it.
It really does mean so much.

The Friends We Choose

Life is partly what we make of it, and partly what is made by the friends whom we choose.
-- Teyhi Hsieh

So true.

Tomorrow is Daniel's birthday.

He will be eight-years-old.

Autism has been with us the entire time, introducing itself during what should have been such happy days, hanging on like a pit-bull, throwing daggers and stealing dreams.

I haven't had the parenting experience I once envisioned. (I know, I know -- who does? But some of us get thrown more curve balls than average. And I was never good at catching.)

I haven't had the marital experience I once envisioned. (And I truly believe that my husband and I had much love for each other when we married. It is amazing how autism can put the spotlight on the weakest parts of a marriage and open the door to so much pain.)

And I haven't had the career I once envisioned. (Although maybe some day...)

But, as I search for silver-linings -- and don't we all need to do that sometimes -- I gotta say that I have been very fortunate when it comes to knowing some kick-ass gals.

I have some very good friends.

There are special things about each stupendous chic who has been a part of my life these past few years -- years when life was turned upside down by things that could have destroyed me if it weren't for some very terrific women (and some very supportive parents).

There is the woman I just happened to meet on a playground one day, who asked about the school across the street from the swings and slides where our children played. It was my children's preschool. I told her about the school's inclusive programming for children with autism -- the reason my son attended. Who knew that she would enroll her child, that we would connect through that decision, that a chance meeting on a playground would lead to a relationship that I value so very much. I admire her for the way she searches for the best in people, for the way she always tries to uplift. It is as natural to her as breathing.

There is the mom whom I met shortly after moving to DFW, at a time when I was feeling lonely and uncertain. Her son, who also has autism, started at the same preschool at the same time as my son. And even though I was not then at a point where I felt comfortable speaking freely about autism and how it affected my son, even though a part of me just wanted to crawl into a hole and ignore the world, I couldn't help but be drawn to her. I am amazed at everything she does for her son. If someone told her she could help her son by moving a mountain, she would exhaust herself looking for a way to lift it upon her shoulders.

There is the friend from back home, my son's Godmother, who manages to remove layers of stress each time I see her. When I am with her, I feel young again. I laugh like a girl, like the girl I once was.

There is the childhood friend who now lives not too far up these congested DFW roads -- a woman who has felt too much pain, pain that was not deserved, pain that is particularly tortuous because it came from the actions of someone she loved with her whole heart. I admire how much she does, without help, for her children. She plays a role in my life that is unmatched by anyone, because hers is the strongest voice counseling forgiveness, urging patience, promoting love.

And there is the woman who has been there for me like no other, through layer upon layer of crap -- the woman who recruited me to run my first half-marathon, who consistently answered her phone in the middle of the night when I literally thought I couldn't take one more bit of pain, who sat with me in my car and cried after I learned an awful, unthinkable truth. What I would do for her .... I love how she listens and cares. I love how she tells me things I need to hear even when she knows I probably do not want to hear them. She could teach a seminar on what it means to truly be a friend.

There are other great women too ...

... the childhood friend who says both her first and last name every time she leaves a message on my voice mail, even though she is one in a million. She is getting married this fall. It will be the first time in such a long time that I have been excited about going to a wedding...

... my daughter's Godmother, with a soul so pure and nurturing, who one day -- back when I was pregnant with Olivia and so worried about what doctors were telling us -- made me laugh and feel good about myself with words I will never forget...

... the gal across town who looks like she just stepped out of a catalogue and says what she thinks without apologies. She reminds me of myself when I had more energy, NOT because I ever once looked like I stepped out of a catalogue, but because I once spoke with the same zeal. She can always be counted on for a favor, and, wow, if only I could organize my life half as well as she organizes a party...

...another autism mom whom I have known for a while but am just now getting the chance to really know. She understands way too much, which, unfortunately, is an indicator of how much she has had to endure. But, oh, how I am so grateful to know someone who understands my life on so many levels. She is such an example of dignity, such a model of strength ...

... the moms I have met through this blog, through autism. May God bless them all, and their precious children. The women who, like me, find some solace in the written word, who strive for a way to make sense of a disorder that has robbed our children of way too much, who pour out their fears, their heartaches and their joys in this great big blogosphere because therapy is expensive, and Lord knows we need as much therapeutic release as we can get, in whatever form we can get it.

My life is not exactly how I envisioned it would be, not even close.

But these women, these wonderful mothers, are so much more than I could have hoped for when it comes to friends.

You know who you are ... love to each of you ...

Leah

Today marked 36.

36 years on this Earth, and I think my face shows every one of them and then some.

I struggled today.

And it is difficult to explain why.

I suppose, to put it simply, this is not even close to what I envisioned life would be like at 36.

I suppose I struggled today because accepting reality can be so damn difficult sometimes.

And my reality is that I sat through an ARD meeting (also known as an IEP meeting) yesterday listening to educational evaluators describe tests results showing that my son is severely, incredibly, profoundly, greatly, monumentally challenged. BUT, despite those challenges, they would like to offer him an amount of therapeutic services that might be appropriate for, say, a kid who stutters.

My reality is that while I sat through this meeting I wasn't thinking primarily about my son's difficulties and how he will be challenged for the entirety of his life. I wasn't thinking primarily of how sad it is that our country places such a low priority on the education of its young people, much less the education of its special needs population. I wasn't even thinking of how stinking unfair it is that I cannot get a damn bit of help-- from insurance companies or the government -- for my son. Instead, I was thinking primarily about how my daughter, my son's only sibling, would handle the stress of trying to help her brother when she is an adult, and she is the only family member left for Daniel to depend on.

My reality is also that I have dealt with more pain the past three years -- pain completely separate and apart from autism -- than I have known how to deal with. The people who have read this blog since its inception know that I started it during a time in my life when I felt desperate and alone -- at a time when I saw my marriage blow up and my life completely turned upside down. I felt as if doors were continually being shut in my face, as if the person I had trusted most in the world had just disappeared, as if I was faced with a boatload of responsibilities for two beautiful children... and if I was not entirely alone, I was without the person I needed most.

That was the fall of 2009 -- a time in my life so horrible that the experience wiped many good memories of so many good years from my brain.

That time and the years since changed me in so many ways.

Some of them good. Some of them bad. And some of them ... well, I am just not sure. Is it a good thing or a bad thing when you go from thinking that most people in the world are honest and decent to thinking that such a belief is ridiculously naive?

Anyway, here I am... another year older if not any wiser. And the circumstances in my life have changed. And thank goodness they have. I know things can always be worse, but when I think of where I was two years ago, or even six months ago, if things had gotten much worse .... I hate to think about it.

I am not divorced, as you might have figured out from my last post.

I still struggle with how to be a good mom to my challenged son and my amazing daughter.

I still struggle with feeling like I am never doing enough for my children, most especially Daniel.

And now I struggle with mending a relationship that was once filled with so many expectations, so many dreams, so much friendship, so much laughter .... so much, so much, so much.

I have to continually remind myself that the heart is such a complicated thing ... just like the brain it is impossible to fully understand. I have to stop questioning myself and my motives and accept the simple fact that the things I am trying to do are based in love for my children and love for their father.

And I have to remind myself to try to live in the day, which is something I have been doing for an incredibly long time.

I am taking steps that I hope will help. I have accepted part-time employment, and I have even found myself in church -- trying to find comfort and peace within the rituals of Mass.

I have so many wonderful people in my life for whom to pray -- people who helped lift me up these past few years when I felt like I could barely function. And, surely, I can find some peace in that.

So, I ask all of you who know me, or who think that you might have some experience with the things about which I write, to keep me in mind from time to time -- either through prayer or good thoughts.

Because what I would really like for my reality to become is ...a peaceful one. And I am not yet there.

Fourteen Years

Fourteen years ago I walked down the aisle on my father's arm, into the arms of the only man I have ever loved.

I was so young -- just a few weeks shy of my 22nd birthday. If you had asked me at the time, I would have said that was too young for most people to be married.

But not me.

Because I was sure.

Sure of myself and sure of my love for this person I had pretty much been infatuated with from the moment we met.

We dated for four years before we married.

We waited another six years before we had our first child.

We both had advanced degrees. We had finished our educations while living in our first marital home -- a cozy apartment hundreds of miles away from our families, from everyone we had ever known, in a place where we could be on our own.

Just us.

Just us and our persnickety cat (who is, amazingly, still alive today at the age of 16).

Just us and months of snow and freezing temperatures. (But who cared? We were young and in love. Who needs extra blankets?)

Just us and the relatively worry-free existence of two young adults with plenty of confidence and little to fear.

The years went by and we moved closer to family; and he started talking about having children. I wasn't quite sure I was ready, but I knew I wanted to be a mother. And then came one frustrating day in court as a rookie deputy prosecutor, and I thought to myself, "What am I waiting for? Why not? I want to be a mom. Who knows how long it might take? I love this man and trust him with my life."

Nine months later, Daniel was born.

Nothing changes a woman's life like becoming a mother. Nothing.

And that goes tenfold -- no, a thousand-fold -- when something is wrong -- very wrong -- with your child.

When he was born, Daniel was simply beautiful.

He still is.

I remember when the nurse was cleaning him, and my husband was practically bursting with pride, I asked, "Does he have ten fingers and ten toes?", which was my way of looking for some assurance that my baby was OK.

I knew that, sometimes, babies are not OK.

Daniel had ten fingers and ten toes. He had a mess of hair and a hearty yell. He scored a 9 on his first APGAR and a ten on his second. He could grab onto your finger with amazing strength from the second he came into the world, and he could darn well eat enough for three average babies put together.

But he was not OK.

Almost eight years after my son's birth, I know too much about too many things I wish I had never given thought to -- autism, lymphatic malformations, ABA therapy, crappy insurance companies, apraxia, heartache, loneliness, disappointment and fear.

If I try to look on the bright side -- and that can be a struggle when the brightness seems more like a dim glow -- I also have learned what its like to have a friend who is one of the most giving people ever to walk the Earth, and I have had a year of therapy that has helped me deal with one hell of a lot of anger. I think I have picked up some much improved listening skills, too, if I can toot my own horn for a bit.

Fourteen years after putting on that dress and walking down the aisle, I am still married, and I still love the man I married.

But things are so much different than they were in that cozy Midwest apartment.

So much has been lost ...

Some days I feel like I am barely functional. I feel like I have all these balls in the air, and I never learned to juggle, much less catch. I still mourn the dreams that I had for my son, whose future most assuredly will be worlds apart from how I pictured it that day I peed on the stick. I struggle with how to maximize his potential, with how to make his days as happy as they can be, given how difficult this world is for him. I struggle with how to make my daughter's life as "normal" as possible, with how to make sure she is not overlooked, with how to foster a loving relationship between her and her brother that will last a lifetime, because Daniel is going to need Olivia for so much after I am gone.

I struggle with a lot of other things as well... so many very painful things, none of which I ever dreamed would be a part of my life's story.

With all that said, I don't think I am in much of a position to give anyone any advice on anything other than this:

If you find yourself dealing with a disabled child, the greatest gift I think you can ever give to your spouse is to say, as often as you can, "I love you." Take him or her in your arms and tell them, "It will be OK. And even if it is not OK, it will be OK. Because we will make it OK. Because I love you. And I will never leave you or this child. No matter what."

Say it in some form or another as often as you can, even though there will be times when you don't feel it -- when you are struggling with the weight of fear and sadness and even anger.

Both parents need to say it, because each will need to hear it. A lot.

It may not be enough. But, maybe, if you say it enough, it will be.

My Dad

I am very lucky to have a father who defines his self-worth, in large part, by what he does for his wife and daughter.
So, in honor of my dad, I would like to share a story.
I think it reveals a lot about who my dad is as a father.

When I was probably five-years-old, I had a rabbit puppet named Natasha. She wasn't very fancy--just a rag-tag blue puppet with whiskers and a pink nose. But I loved her.

My parents purchased Natasha during a trip to visit my grandparents. If memory serves, the store was about four hours into our five-hour trip to the simple but beautiful home in Northwest Arkansas -- where my grandmother baked her melt-in-your-mouth angel food cake especially for me and my granddad would play hide and seek for hours.

Natasha slept with me at night and she accompanied me on trips. Until, one day, she was gone. Lost.

My heart was broken.

I had dozens of other stuffed animals, all of whom were bigger and fancier.

It didn't matter. I was heart-broken.

And so my father, who always has believed that you either find a way to stop someone from crying or join in their tears, got in his car, drove four-hours each way and came back with another Natasha. (Thank goodness she wasn't an original.)

The problems in my adult life have not been that easy to solve.

But that has never stopped my father from wanting to.

My dad never missed a dance or piano recital.
He loved every pet as much as I did, and he dug a grave at the death of each, with tears in his eyes.
He went down to the courthouse to pay the speeding ticket I got when I was 16 (and it was a whopper.) He told me not to worry about it but to be more careful. (And he didn't even tell my mother.)
He waited for me at the finish-line of the half-marathon I ran year-before-last, when I was running just to remember that I was still alive.

I have known from a very early age that I am the most important thing in my parents' lives. They each set such a high standard of parenting -- one that, in many ways, I doubt I will be able to equal.

If I could tell my dad one thing it would be to stop worrying so much, to stop trying so hard to find a way to fix all my problems.

But that would be like telling the Pope to stop praying.

Happy Father's Day, Dad. You are very, very loved.