Tag Archives: Sometimes I’m Serious

Saying Grace

I’m not a particularly religious person. We stopped going to church when I was very little, and while I was baptized, I can’t even tell you the exact denomination. Protestant? Episcopalian? Something like that.

Then when we moved to DC, my parents made the incongruous decision to enroll my brother and me in private Catholic school. Though as a parent myself now, I think it’s safe to assume this was less random whimsy than the result of research involving tuition, academic ranking and proximity to our new home.

Nevertheless, at age eight I had to learn the Lord’s Prayer, which was recited each morning right after the Pledge of Allegiance. My mother, a lapsed Catholic, anticipated that we might have trouble understanding the exact words of the prayer with its lack of colloquial phrasing. So she made sure to explain that we were to say, “our Father who art in Heaven, hallowed be thy name,” not “Harold be thy name.” Apparently, this caused much confusion in her own childhood.

Outside of school, I spent quite a bit of time in the homes of friends where religious attitudes ranged from well-meaning to strictly devout. Almost all, unlike my own family, bowed their heads to say grace at the dinner table. This is where I learned how to recite another prayer that began, “bless us, oh Lord, for these thy gifts,” and even pop off a nonchalant sign of the cross finale move.

All were rote words and actions for me. I knew that saying grace was a form of giving thanks and asking for continued guidance in the whole “being a good Christian” thing… But I never gave the ritual any serious thought. I chalked it up to one of the many inexplicable have to’s that plagued any given family.

Grace was a nebulous concept for me. In school it was used in religious terminology. In the novels I read, it alluded to fluidity of movement or an innate sense of peacefully navigating the world. Perhaps it was this lack of definition commitment that put grace in the category of words that didn’t hold much power in my life. Too formal or lofty in its religious use and too precious and feminine in everyday conversation – it just didn’t resonate with me.

And quite honestly, it’s not a word that seemed to resonate with the people around me either. Sixteen year old Catholic school girls don’t talk about grace; they talk about boys and clothes and favorite books. I never once heard one of my college friends refer to grace while we were studying for exams or ordering pitchers of beer at the local dive bar. And in our twenties, my Catholic friends were still lying to their parents about going to church every Sunday.

It was almost inappropriate to refer to religion out of context. As if using words like faith or grace would push you into the territory of proselytizing bible thumpers. It just wasn’t done.

Grace, faith, church…just a bunch of have to’s that no one chose to discuss let alone prioritize.

Now at age 41, I can talk about pretty much anything with anyone. And I have a far more diverse assortment of friends and acquaintances. Some of my friends like me, don’t attend church. Others have grown more devout over the years. And no, they’re not all Catholic.

I have friends who feel comfortable referring to God in casual conversation. And that’s fine with me. Because I understand that they consider their faith to be one of the best and most beautiful things in their lives. So if they want to tell me that Jesus was there for them in a time of need, I don’t feel mildly embarrassed and unsure of how to respond. I just accept the words in the spirit they are given – with the best of intentions. By sharing these thoughts with me, they are showing me the best of themselves. They are giving me the best of themselves. How could that be inappropriate?

So it was completely natural for me to sit with a grieving friend and listen to her thoughts about God’s plan in her life. And in the midst of this heartbreaking conversation, she said something that changed everything for me.

She was talking about her feelings of responsibility. How she believed things would have happened differently if her husband had been there to change the course of events. And how grateful she was for the grace he showed her by not looking for someone to blame. She speculated that she may not have been strong enough to do the same.

After a moment of incredulity that she would think blame had any place in such a tragic accident, this one simple word – grace – filled the room. If you think about it, everyone makes this choice on any number of levels, every day. And for a while now, I’ve been giving considerable thought to what I choose. I just never had a name for it. Suddenly, I did, and I could say without hesitation that if put in the same position as her husband, I would choose to show grace.

Not because I’m such a fantastic person of course, but because I’m hopelessly flawed and so often in need of the forgiveness and understanding of others. Aren’t we all… How can she be so selfish? How can he be so cruel? WHY would anyone say something so insensitive? Every day there is a reason to be hurt or insulted or outraged by the words and actions of others. But the concept of other people is subjective. And I remind myself that I have often been the one unintentionally hurting, insulting and causing outrage. Who am I to assume intentions? Why not offer others the benefit of the doubt instead?

Now I don’t have to run through the complicated reasoning behind choosing to forgive or understand or assume good intentions. I just say “grace.” Maybe not with my outside voice…but that one word is a definitive reminder. A declaration. An incantation.

We put up with a lot of have to’s in life and I know that this concept is very much in that category for some. Turn the other cheek…take the high road…give it up to God. There are unlimited personal versions of what is largely considered a trite platitude. But giving it a name and seeing it as a choice has put it in a new context for me. What was once a sigh inducing “have to” is what I now consider to be the best part of me. The best I can give anyone. I can show them grace.

Sure, I get mad or feel offended sometimes. I lash out in anger. I even place blame. But it’s momentary, because at the end of the day, I don’t like feeling that way. I hate the idea of someone carrying the weight of guilt on their shoulders. Life is hard enough – why not cut each other a little slack?

Initial perceptions don’t always match true intentions. And people usually have good intentions. That should count for something, right? Destination notwithstanding, they do make excellent paving stones…. And maybe my choice to see things this way – my grace – can help to reroute that descending road. I’d rather believe the angel on one shoulder than the devil on the other. What the hell – it helps me sleep at night.

One of my favorite movie quotes is in The Big Lebowski. The Dude says, “You’re not wrong Walter. You’re just an asshole.” Sometimes we can get so wrapped up in ideas and principle, that we forget about people. We forget that it’s so easy to stumble over that line we’re so quick to draw in the sand. So easy to say the wrong thing – to do something so incredibly stupid. And to not even be aware of it. Why is it so hard to forgive or understand or just assume that no harm was meant?

Why not be more mindful of this choice? Why not choose to not be an asshole? Give the benefit of the doubt and assume good intentions. Choose kindness over principle and forgiveness over justice. Let people give you the best of themselves, regardless of your personal beliefs or habits. Consider the perspective of others. Consider the fact that to everyone else, you are “other people.”

I’ve always been a bit of a late bloomer, but I don’t think it’s too late to choose happiness. For me, being happy doesn’t come easily. I fight for it. I choose to look for the best in others. I stumble and fall short sometimes, but I choose to get up and try again. I choose to let go of the past. To give second chances. To keep moving forward. To see possibility in the future. To say that today was a good day.

I choose to accept that sometimes I will be an asshole. And to not judge others who make the same mistakes. I choose to say I’m sorry or I forgive you. To say that it’s okayI’ve been there. I understand.

To say that just meaning well still counts. That just being here is a miracle.

To say that I couldn’t do any of this without other people. To say thank you.

To say grace.

The Good in Goodbye

I went to a funeral last Friday.

And I’ve been thinking a lot about it over the past week. About all funerals, really.

What is it that they say about funerals? That they’re for the living? It makes sense. Only the living would really need a funeral. Because it offers a means of saying goodbye.

This public acknowledgement of – this bearing witness to – an ending is sometimes the only thing that allows us to move on. Forward. Possibly, to even see that as an option. A funeral honors this ending/beginning, and gives us permission to grieve, hope and continue to live.

At age 40, I’ve been to many funerals. And as far as religious rituals and rites go, I wouldn’t say that I personally need them. I don’t need a ceremony to say goodbye. I don’t need to commune with black garbed strangers I’ll probably never see again. I don’t need a gathering.

But I could never say that I don’t need people.

Which is an ironic statement coming from me since I love having time to myself. I actually like being alone. I could spend an entire week without seeing another person and never feel lonely. But this is exactly why I need people. Because for me, being alone is easy. And there is nothing to be learned from an easy life.

I need to feel the press of humanity around me. To bump into their sharp edges and feel a little uncomfortable. I need to be jostled and forced to participate. To stay awake. And alive.

Funerals are taxing for an introvert. All of those people…

And ultimately – I think that’s all a funeral is. Just people bumping into each other. Taking what they need and giving what they can. From family and friends supporting each other to strangers sharing a moment of companionship. It’s just a bunch of people standing around, feeling.

We are surrounded by people every day. On the bus…standing in line at the grocery store…sitting in a movie theater. So many experiences we remember are actually moments in time shared with strangers. But how often do we acknowledge that? That indirect togetherness?

Ceremony aside, a funeral is an ideal occasion to recognize how connected we all are. Saying goodbye is a terrible thing to have in common – but it makes us actually look at each other.

The blond woman who puts her head on the shoulder of the man next to her. So tender. They must be close. I wonder if they are part of the family…maybe work friends.

The two women walking down the aisle. Mother and daughter? The older one looks very sad. The younger one holds her elbow. The small smiles they give me as they pass don’t reach their eyes.

A toddler in the front row wails and is quickly whisked to the back of the church. Her boots are spangled with sequins. A granddaughter?

As far as people watching goes, it’s not all that different from an afternoon at Whole Foods. Everyone has a story. Most of us are here alone. Alone in a crowd that’s only different in its singular purpose of saying goodbye.

But the goodbyes that truly bring us all together come from the people in the front row. Especially those who stand up to tell stories about the loved one who died. They are not just sharing anecdotes that we may or may not already know – they’re handing us pieces of themselves.

What a rare and extraordinary experience. To be alone yet together in a crowd of friends and strangers, seeing a unique individual through the eyes the people who love them.

The first time I ever witnessed something like this was in high school. A new classmate (who would later in life become a dear friend) stood in front of hundreds of people to tell us about her twelve year old brother. She did this by reading a letter his friends wrote about him.

In college, I listened to my mother’s sister and cousin tell stories about their “Nana” who never married or had children, but instead poured all of her love into four little nieces. She let them try on her jewelry and made an event of watching the Miss America pageant.

When a good friend’s father died, I listened to her sister tell a hilarious story about his dedication to snapping great photos at the many weddings he attended. His scrappy hustle and willingness to elbow any professional photographer out of the way inspired his six children to call him, “Matty Kane, cub reporter.”

A few years later, I listened to that same sister’s husband talk about her valiant battle with breast cancer. When she received this diagnosis, her immediate response was, “thank god it’s not one of my babies.”

And in the fall of 2011, I sat in complete awe as one of my closest friends described the too short but incredibly full life of her twelve year old son. He had a sweet nature and a talent for making people feel special.

I think that two funerals for twelve year old boys has been entirely enough for me. I can only hope that there will never be a third.

But the funeral last week was not for a boy. It was for a man with thirteen grandchildren. A man who lived both a long and full life. One full of stories.

Some of these stories were told by his children who each took a turn to talk about the father they knew. It was especially moving for me to witness this since I practically lived in their house when I was a little girl.

Madeline was like the sister I never had, which made her siblings my extended network of big sisters and younger brothers. So the stories they told about what a character their father was…his irreverence…his tendency to bring home random “new friends” as if they were long lost family members…his constant supply of Lucky Strikes…they all brought back so many memories of that big family with their larger than life patriarch. But I was especially touched by their more serious, poignant insights.

Marjorie spoke first, explaining that she and her sister Gigi were tiny girls when their father came into their life. He fell in love with their mother and without hesitation, claimed them as his own. It takes quite a man to do something like that.

Oldest sister was followed by youngest brother, Reilly. Who is inexplicably no longer a ten year old boy. When did he become this man with SIX children of his own? But man he is, and so much like his father. He talked about the man who taught him how to be a man, starting with the value of a strong handshake. A lesson he’s passed down to his own sons.

My Madeline (I always think of her as “My Madeline”) went next. She was a Daddy’s Girl and never one to wear her heart anywhere BUT on her sleeve for the world to see (dry eyes beware). She shared her earliest memory of being at the beach, where her father would carry her out into the waves. She thought it was scary…and also exciting. But she always felt safe.

Gigi was the last to speak, and she said that she found herself at a loss for words. She has endured what could only be described as a mother’s nightmare over the past year. And the presence of supportive parents has contributed largely to her survival. She didn’t share memories, as no story or quote was required to express the depth of her love and grief. Instead she told us how much this support meant to her – just the simple act of “spending time with him.” Knowing that he was there.

One brother was not able to talk about the father he knew, but his presence filled the room. John died young, just barely a man himself. His Down Syndrome was never perceived as a disability in their house, but the health complications that so often accompany the condition were a constant worry. The loss of this much loved son and brother was a terrible blow to the family. And while this wasn’t John’s funeral, it did feel like a continuation of grief and gratitude for the time they all had together.

While I do not have a son with Down Syndrome, I do have one with special needs. And I think that I owe much to my friend and her family for my perception of him as being just perfect the way he is. This isn’t an easy thing to do. No one finds out they’re pregnant and wishes for a child with special needs. No one wants their son to struggle with the things that come so easily to others. But I grew up watching a family find the exceptional in a boy with special needs because of his differences. And I am so incredibly grateful for that.

I didn’t go to John’s funeral. I was in college, in another state and young enough to believe that my presence wouldn’t have been important. But 20 years later, I know this is far from true. There are no extraneous people when it comes to saying goodbye.

Whether we are there alone or in the front row, we are all part of something bigger than a rite or ritual. A funeral isn’t just a miscellaneous assortment of people in pews. It’s a shared moment of grief in loss, gratitude for life and the acknowledgement that that everyone – even an introvert like me – needs people.

Alone in a crowd or together around a family table, we are just people bumping into each other’s sharp edges, reminding each other to participate in life – to actually look at each other. We take what we need and give what we can. And we tell stories to help us remember.

And as long as there are stories, then we never really have to say goodbye.

Before and Now

If you are a parent, do you even remember what life was like before children?

Well of course, we all remember! But it’s hard to imagine going back there – to have no knowledge of how it feels to live several lives simultaneously. Primarily, we’re living our own life. But at the same time we are experiencing the world through at least one other set of smaller, yet much wider eyes.

I have always loved decorating for Christmas. And the post-children Christmas tree is a source of much angst that I’ll discuss later. But while outside looking at our house today, I was struck by how much it reflects the integration of family.

This is what you would see before we had kids:

And this is most definitely after:

Together, it makes for a slightly confusing blend of just right and just a little too much. And I wouldn’t have it any other way.

Everyone who has children thinks about “before and after.” But some parents have a terrible before and after: before, when the family was together, and after, when one is missing.

On Friday, a new set of parents was initiated into the nightmare of before and after a child was lost. They are just a few among many, but they represent the reality of our uncertain future.

My heart breaks for EVERY parent who has ever lost a child. But instead of indulging in despair for all that is terrible in this world, I am reminded to appreciate the present. To revel in the ordinary. To delight in the day-to-day tedium and frustration of raising children. Today was okay. It was fine. And in that I see extraordinary joy.

This afternoon, I hung my simple wreaths with the pale blue satin ribbons. Then I stepped back to see the juxtaposition of restrained elegance next to garish holiday ornaments and a brown extension cord dangling from our newly exposed front light bulb.

I couldn’t be more grateful for the fact that my house looks a little crazy. I’m ecstatic that my perfectly decorated tree seems to be sprouting new ornaments made of paper cut by tiny, inexperienced hands. The screaming match going on in the basement playroom is music to my ears.

This is life as I know it now. For now, everything is fine.

It’s hard to not feel sad in the face of such terrible grief. Especially knowing that in a split second, I could be one of the grieving.

But I try to remind myself that everything is fine until it’s not. And when everything in your own life is fine, you just have to go with it. Because when it’s not, you never really get fine back.

My heart goes out to everyone missing a much-loved child today – both friends and strangers. And in honor of their treasured before, I’m going to appreciate every second of my now.

Whenever I feel overwhelmed by life or mired down in petty concerns, I will try to remember what is truly important. To appreciate the exquisite pleasure of a mostly good day with the people I love.

In the face of an uncertain future, I am putting all of my energy into cherishing my own children who are so very HERE right now. I’ll feel sad on my time – not theirs. And I’ll decorate my heart with their chaos and garish enthusiasm for everything that is good.

Good Omens

The other day, I burst into tears while apologizing to another mother at the pool.

This was as much of a surprise for me as it was for her. While I do cry on occasion, it’s generally the result of frustration or hurt feelings – and almost exclusively reserved for my husband in the privacy of our own home. And I’ve never been one to wear my heart on my sleeve, let alone bleed all over the floor of the ladies changing room.

But in that one moment, every shred of anger, sadness and anxiety that I’ve ever stuffed into my bursting closet of repressed feelings poured directly out of my eyes. It seems the act of summoning words and speaking them aloud redirected just enough attention away from my tightly guarded heart. This breach in security didn’t incite an actual riot of emotions, but a few of the sly ones slipped through the cracks and joined forces. They must have been watching – waiting patiently for an opportunity to break out. And it took only seconds to assemble their weapons of destruction – heat seeing missiles aimed at the frontal lobe of my brain.

Or at least that’s how it felt. Like a sneak attack. And a traitorous one at that.

I don’t cry in front of strangers. I just wanted to tell her that she didn’t do anything wrong. Because at the end of the day, she really didn’t.

No – she shouldn’t have gone out of her way to tell the lifeguard Oliver was swimming in front of the diving board. And yes – she should have talked to me about it since I was right there, actively instructing him to move over, make room for the other kids waiting to jump. Especially since the lifeguard was watching it all from a nearby chair, letting me handle it.

She overstepped. She called my parenting into question. She insinuated that my child was a problem. But none of that was her intention. She was concerned about safety. They were only there for a half hour and she wanted her own kids to have more time jumping off the diving board than waiting in line. And the minute I said, “excuse me, I’m talking to him about that and the lifeguard is watching – my son has special needs – it’s complicated – we’re doing the best we can,” she realized that regardless of her not-bad intentions, she was out of line.

It was the typical non-confrontational confrontation. She did what she did, I said what I said, and then we both tried to make nice by talking to each other through our children. I told Oliver that another mother asked if he could swim away from the diving board – we had to give her kids a turn – and if he couldn’t listen to the grownups, then he would have to take a break from the pool. She told her kids that the pool was crowded today – they couldn’t take over the diving area – they could all have one more jump, but it was just about time to go. We both informed our children that in a few minutes it would be “break” and that we would be going home.

I hadn’t thought to apologize at first. Our indirect communication was enough to let each other know there were no hard feelings. But I just had to say that thing about special needs… Way to make someone feel a bad person – implying that they were picking on your special needs child! How was she supposed to know? She may have felt terrible about what happened. And I would hate for that to be the case since I am queen of obsessing over my own bad behavior dating back to preschool. It’s not fun feeling like shit over transgressions long since forgotten by the other party.

So as we packed up our pool bag and made our way to the changing rooms, I decided to look for that family. To tell that woman I was sorry for snapping and that she didn’t do anything wrong. Technically, she did – but what did that matter in the face of intentions. Just like Oliver and I are doing the best we can at the pool – in life – she’s doing the best she can as a parent. We all are. And I thought she should know I understand that.

I caught up with her at the entrance of the changing area and before she could say anything to me, I cut her off with my own olive branch.

If only I could have stopped talking right after that. I could have swallowed back the lump rising in my throat. I could have taken a deep breath, squared my shoulders and moved forward…made it through that moment of vulnerability unscathed. I could have made it out the door without crying.

But she felt the need to apologize too. This is when she explained herself to me – how she was thinking about her own family’s tight schedule and regretted her complaint the minute she made it. She was sincere. Embarrassed. Sorry.

So I had to respond. I said I understood – that I overreacted, but sometimes it was just really hard. And while this statement explained nothing at all to her, to anyone in my position, those few words actually do say it all. Sometimes it’s really hard. It’s hard to have the “different child.” The son who looks “normal” and is even big for his age, but acts like he’s much younger. To have to explain him to others so they don’t judge him so harshly. To be so proud of how much he has accomplished but so frustrated by how far he has to go. To not know what the future holds.

It’s hard. Really hard. And like a key in a lock, that last word opened the floodgates.

So much for not making her feel bad.

But I did blubber through a new rendition of “you didn’t do anything wrong,” that better described this unusual and unexpected turn of events. “I really never cry about this kind of thing…it’s just been a long day…I’m fine…seriously, it’s not a big deal…nothing to do with you.” At least I pulled it together at the end and was able to clearly restate that I just wanted to apologize and make sure she understood that I didn’t think she did anything wrong. Because that was all I wanted to say. Hopefully she believed me.

And to be completely honest, this wasn’t the first time my words were swallowed by a sneak attack sob that day. Several hours earlier, I had a follow up call with Oliver’s auditory processing therapist. He had just finished one of his bi-annual two-week “loops,” so we were discussing how it went and what I was now observing at home. As usual, the conversation was very positive. Progress had been made and the time he spent with them was productive.

I asked my standard questions about what we should be doing at home – what we should be working on when school starts. Then we lapsed into telling “Oliver stories.” Because he really is a character, and his delays, emerging language and exposure to television make for some pretty fantastic ESL moments.

My recent favorite is an exchange we had regarding the movie, Cars 2. He was telling me an involved story about bad guy, Professor Z and his evil doings. But he lost me at one unintelligible word:

Oliver: …and then Professor Z told his fugs…

Me: Fugs?

Oliver: Yeah – fugs.

Me: What are fugs?

Oliver: [perplexed by my ignorance] They’re trouble making villains.

Thugs. I love that.

And it would have been so easy to just end our phone call right there. But I never can.

I have to ask the unanswerable question. I can’t help myself. The inconvenient lack of mass produced crystal balls can’t stop me from asking. It’s pathological. Or maybe just a little desperate.

After a perfunctory disclaimer about the impossibility of predicting the future when so much can change…I always ask what right now, this very minute, she sees as a possibility for my son. What does the future hold for him? Even if it’s just a guess. Have we hit any hard limits? Have once-distant maybe-somedays receded further into improbability? Or have they moved closer within reach – come into sharper focus? When can I actually touch them or should I just stop trying?

And of course, there aren’t any real answers. This is the curse of having a special needs child who doesn’t fit into an existing box. No trail has been blazed for him. So his potential is unknowable, and therefore unlimited until proven otherwise. Of course this is a good thing, but it leaves the parents in a constant state of anticipation. Waiting for something to happen. The best case scenario or the worst – and every day you get a little bit of both. Just to keep you on your toes.

I always default to hope. Even before becoming a mother, I’ve survived life on planet earth by assuming everything will work out. That it will all be okay. And I’m usually right.

So I do the same thing when it comes to my babies. I love who they are now, and I expect only good things for their future. I know the dark flip side of the coin but I’ll always go for two out of three…three out of five. Until you tell me the worst, I’ll hope for the best.

During each pregnancy, I would lie in bed dreaming of everything I wanted for these children. They would be artistic, interesting, charismatic…the list was far too long for me to remember. But later, as they grew and their personalities and challenges began to surface, I turned to the practical.

Of course I want EVERYTHING for all three of my children, but if I’m going to play the Magical Thinking game, I have to keep it simple. Be specific.

I want Oliver to be intelligent, kind and funny. I want people to like being around him, not just because they like him, but because they like how they feel about themselves when they’re with him.

I want George to be successful, but also compassionate. I have no worries about his ability to make people laugh – but I also want him to take the feelings of others into consideration. I hope that he can hold onto his lighthearted side and not take himself too seriously.

I want Eleanor to be strong and confident – to embrace her talents and believe in herself. I don’t want her to feel intimidated by the accomplishments of others, but to instead be happy for them as she focuses on her own goals and achievements.

There’s more. Of course. But these particular qualities are in the current rotation of my hopes and dreams because they’re based on what I see in each child today. And they seem realistic – attainable.

So as I discussed Oliver’s possible – unknowable – future with his therapist, I drifted to this line of thinking. And I wanted to be perfectly clear – explain that I’m asking for very little, here. I’m starting with the basics – things that every parent wants for their child. “In my hopes and dreams for his future? I want him to have friends…” And that’s as far as I got.

Apparently, this audacious act of speaking the words aloud put too much pressure on my egg shell composure. Magical Thinking is one thing, but verbal incantations will break me.

Then the tears came. Just as they would later in the ladies changing room. Two uncharacteristic moments of weakness in one day.

But this time I had invisibility on my side. I could squeeze my eyes shut and clasp a hand over my mouth…physically pull myself together in semi-privacy. And the irrational shame I felt was lessened by the knowledge that this was nothing new for the person waiting patiently on the other side of the phone line. I’ve seen the tissue box in her office.

A few seconds later, the power of speech returned and calendars were consulted for future appointments. The soothing act of scheduling conjured up a necessary illusion of control. I could manage my emotions as I decided when and where I would find help for my son. This is the one element of the future that is completely under my control.

Going to the pool seemed like a good idea after that episode. Get outside – let the kids entertain themselves for a while without any electronic aids. Little did I know…

But I’m still glad we went. Because you can’t live in a bubble. And nine times out of ten (two out of three…three out of five…) we have a fabulous time without any unpleasant incidents. The pool is our happy place. It’s never crowded – only residents of our neighborhood can use it. We always see friendly faces and most of the regulars know enough about us to cut us some slack.

We can walk there too. And when the kids were younger this was actually a highlight of the outing. My toddlers would sit up in their stroller and point chubby fingers, tree! bird! car! But their favorite stop (oh yes, we had to make stops) was the house with garden gnomes. Every neighborhood has one of those.

Four year old Oliver could walk over and pat them on the head, trace their smiling faces. Not much of a conversationalist at that age, he would speak to them in his own language of DVD dialogue and gibberish. The twins would ask, “whaddat?” And day after day I would tell them. But George could never get it right. He insisted on calling them “omens.”

This still makes us laugh – even though the kids don’t really remember those walks. And as we pass that house carrying our pool gear – eight feet on the pavement now that strollers are a thing of the past – I’ll point and say, “look omens!” I like to think of them that way too. Their impish grins hint at the fun to be had – happy times on the horizon.

I have good memories from those walks and summers at the pool. Even our last afternoon there with its tense moments and tearful exit has a place and a purpose. I’m pretty sure that the woman who didn’t do anything wrong will now be a smiling face to greet us. She’ll be another neighbor who understands and doesn’t judge too harshly.

This is the kind of thing that validates my hope that everything will be okay. That people mean well. That the odds will continue to be in our favor. That Oliver will always have friends.

I can’t predict the future, but I don’t think I need a crystal ball. I’ll always fight tears, but they have no power over my hopes and dreams. I know this now and I’ll hold that truth close to my heart when things get hard.

A hard day came and went, and I’m still here believing in possibility. That must count for something. In fact, I think I’ll take it as a sign. An omen.

And a good omen at that.


Linking up to Just Right today! I should really do this more often…

The Worst Fear (Alternatively Titled: “Oliver’s grandmothers probably shouldn’t read this…”)

Since I’m fairly certain said grandmothers have not heeded my advice, I’d just like to put it out there that everyone is OKAY.

With the exception of maybe me… Though my robotic ability to shut down emotions when they threaten to render me unable to cease crying for the rest of my life did kick in about five minutes into my nervous breakdown. So that’s good.

This talent of mine serves me well because at the core, I’m a very fearful person. I worry about everything. When I was little I would worry about tidal waves and twisters. I worried about nuclear war and my parents dying. I had night terrors and no matter how irrational, I couldn’t stand next to my bed after dark without imagining a hand reaching out from under to grab my ankle. The world was fraught with danger and I was keenly aware of every awful thing that could possibly happen to me. I saw shark infested waters – both literally and figuratively.

So now, I disconnect. I just don’t think about it anymore. I simply don’t have time. I have too much to juggle and it’s made me very practical. I’m a good person to have around in a crisis. I’m calm and analytical. I wait to hear all the facts before forming an opinion. And I don’t consider the worst until the truth grabs me by the neck and slams me against the wall. Even then I’ll hold it together. For me, it’s a matter of survival.

But we all have our breaking point. And I hit mine yesterday when for about five to ten minutes in the late morning, I lost Oliver. Meaning, I searched my immediate neighborhood and I couldn’t find him anywhere.

One minute I was walking in my front door to get Eleanor a cup of water and the next I was racing around our block, frantically calling his name.

When I left him, he was sitting about ten feet away from our house in (of course) a patch of dirt. He was drinking the first cup of water I brought out for Eleanor since he drained his own so quickly that I just gave him hers and ran back in to get more.

When I stepped back outside, I found George engrossed in turning on the water for the garden hose and the absence of Oliver. A yellow plastic cup lay on its side on the patch of dirt. No spills – no mud. He drank all of it.

Ignoring Eleanor’s constant chatter behind me, I asked George to turn OFF the water – he knows that he’s not allowed to play with the hose – and WHERE did Oliver go.

My younger son pointed vaguely down the block and said, “down the hill.” It was obvious that George had no idea where his brother went, but I started walking in that direction. It was as good as any other.

Oliver tends to wander off. Never far, and typically to predictable locations, but I always have that brief pang of “what if?” The one that we barely register since it borders on unnecessary drama and fully crosses the line of unlikely. And by the time it could possibly gather momentum, the child appears – blissfully ignorant of the big bad world and its predators lurking behind every theoretical corner. Then we yell or hug or get distracted by another child. But the resonance of that pang stays with us long enough for a glimpse of perspective. What truly matters in our lives. Those lost earrings become a welcome price to pay – the trade off for this moment of relief. So lucky…a charmed life I’m living, really.

But when I reached the end of our townhouse row and turned the corner, my child wasn’t there.

And when I turned the next corner, he still wasn’t there. Or the next corner. Or the next. And suddenly, I was back where I started.

I looked at the strange men doing landscaping and noticed for the first time that they all drive vans. Then I asked George again, “WHERE did Oliver go? Is he inside?” Before even hearing his answer, I crossed the street to look in the good climbing tree. Then I doubled back to try the path to the bridge where we throw rocks in the water. Our neighbor was walking his dog there and said he hadn’t seen Oliver. So I went up another set of steps that would lead me back to the area behind our house.

Then I quickly returned to the front and ran into the house, still calling for him. Eleanor said he wasn’t there but I kept calling. At the door to the basement, I heard how hoarse my voice sounded. I didn’t notice that I was still holding Eleanor’s second cup of water until I hurled it down the stairs.

Back outside. More searching.

Too much walking and running and calling “Oliver…Oliver…OLIVER…OLIVER…OLIVEROLIVEROLIVER!” The twins echoed my calls and I realized that they were now both on the front lawn, trying to aid me in my search. Within minutes they would be lost in the neighborhood too, so I pushed-dragged them to my friend’s house two doors down, and barked, “stay there I don’t know where Oliver is stay THERE!”

We had all been at this house earlier for a casual brunch, and several other mothers were still there. My friend asked if she should call the police and I think I said yes – but I may have just showed her the yellow cup in the patch of dirt. Because he was JUST there a minute ago.

But more than a minute had now passed. Many minutes. Too many. And with each one, the vapor of “unlikely” continued to gain substance. I ran back across the street and through another cul de sac, distantly aware of other voices calling my son’s name.

It was only when I was looking down a hill at the nearby creek that I heard my name. Someone (or everyone) was calling for me. And that meant they found him. It never occurred to me that it could have been anything else. Anything else would be unbearable.

As I rushed back up the street and my house came into view, I saw another neighbor helping Oliver step out of my car. MY CAR. He was in my car.

Me – the city girl who once never left her car unlocked for a single minute. Not even to run into the house for forgotten sunglasses. Because leaving a car unlocked meant that strangers could get in. Maybe steal it. At the very least, pilfer the meter change hidden away in the glove compartment. That city girl, now lulled by her quiet suburban neighborhood and distracted by multiple children let locked car doors fall off the radar. Constant vigilance was reserved for boiling pots of water on the stove and cleaning fluids locked under the sink. Not the car.

And my five year old son climbed into a black Ford Expedition with tinted windows and child safety locks in 90 degree weather.

If one of my friends hadn’t seen a flicker of movement, who knows how long it would have taken for me to find him there. And what that could have meant.

Let’s play hide and seek mommy! Where’s Oliver…

That is real fear. The vampires and sharks of my childhood look like Smurfs and Care Bears when pitted against the fear of losing my child.

I barely said thank you to the people who helped me search for Oliver as I silently led him into the house. And the minute the door closed, I burst into tears. I was SO scared. I couldn’t find you. You were LOST.

I could have yelled or spanked him. I could have sent him to his room for the rest of the day. I could have held him tight and asked if he was okay, told him everything would be alright. I’m here now. Mommy’s here.

Instead I sat and cried and said I was scared. So scared.

At first he laughed. The nervous laughter we’ve all experienced when faced by something impossible. It wasn’t just a crack in his mother’s composure. I dissolved before his eyes. I fell to pieces and I couldn’t help myself.

But I think this probably made more of an impact. If he was scared while locked in the car, he didn’t show it. He has his own walls – his own habits of disconnecting with reality. But he too has a breaking point, and apparently, it’s me. We both cried and said we were scared. And said we were sorry.

Then joined by the twins, we fell into a teary, sweaty heap in front of the TV and decided not to leave the house until it was time for Oliver’s therapy appointment.

I sat with all three of my children and basked the luxury of knowing that they were safe. Nothing bad could happen to them in that moment – I could protect them with four walls, air conditioning and the tedium of passive parenting. With my physical presence. As long as we could see each other, nothing could touch us.

Hours passed, therapy was received, and commuter traffic was endured. And when we returned to the slower speed limit of our neighborhood, the last traces of our anxiety dropped away. I opened the windows and turned up the radio. Warm air rushed in to remove the chill of fear.

In my side mirror I saw Oliver putting his hand out the window to feel the breeze. Part of me thought, “keep arms and legs in the vehicle at all times…” but I remember pushing my own palm against the wind when I was his age. No tree limbs or other cars ever came close enough to hurt me. I never worried about that. Earthquakes maybe…but not losing my hand to swerving motorcyclist.

So I decided not to worry about it now. I put my own hand out the window and felt the pressure of wind. My own flesh and bone, solid and invincible against the blast. With a little tension and concentration, I couldn’t be moved. I could even push back.

The what ifs will never go away. They linger on the edges of our every movement, decision, omission… And sometimes they catch up with us. There is always a terrible story to hear. To simultaneously feel sorrow for others and immense gratitude for our own luck, grace, karma.

I once read a brilliant line about what it means to become a parent. While the source left my memory long ago, the sentiment stayed with me – that someone’s child was born and “fate took a hostage.”

Every day I feel the truth of this. And it humbles me. I have to take responsibility for my power and accept my powerlessness and ultimately just hope that my luck will hold.

And I do that every day. I guess we all do.

It’s a charmed life I’m living. Really.

*I wrote this in June 2010. Christy posted Ava’s Rule on FaceBook and it reminded me again how important it is to LOCK YOUR CAR DOORS. Not to protect your GPS or meter change. To protect children. Any child can open a car door – but only if it’s unlocked. Forward this reminder to everyone you know. Not this link – this is just a cautionary tale that people may not get around to reading. The postcard for Ava’s Rule says it all, “Always lock your car and store your car keys out of kids’ reach. Verify your kids know to NEVER go to the car unsupervised. Actively seek out sheltered locations to park your car.

Stay cool and stay safe this summer!

Stupid

It’s a loaded word.

And we use it all the time in so many different ways…

How could I be so stupid?…then the stupid coffee maker broke…don’t say stupid honey, it’s not nice…don’t be stupid, of course I’ll help with…that stupid dog was barking all night…please don’t say stupid sweetie, it hurts feelings…”

I’ve tried explaining that it’s okay to call a thing stupid, but not people…but that’s not entirely true either. “Your picture is STUPID – it doesn’t even look like a…” Sometimes calling things stupid hurts feelings too.

So we go back to the black-and-white-right-and-wrong-never-always world that makes sense to children.

And we NEVER say stupid.

Until we do. And get corrected or copied. And then remind ourselves that we’re doing the best we can. No one is perfect. And we try again.

A few months ago, Eleanor called Oliver stupid.

And what siblings don’t do that? Hurl that easy meanness back and forth without a thought beyond momentary anger? Feelings are hurt. Tears are dried. Sorries are said. And everyone understands that it’s not really true. “Of course you’re not stupid, she didn’t mean that.”

But when your daughter calls her older, special needs brother stupid, there is far more at stake than hurt feelings. Because at age six, Oliver can see that he’s different – that some things come more easily to his classmates. To his little sister. And he understands what stupid means.

Poor little sister…you’re just being a kid. Your cruel words have no agenda. And you don’t really mean it. Even when you do.

In this scenario, Oliver was throwing a blanket over her. Over and over. No matter how many times she asked him to stop. Because sometimes he doesn’t know when to stop. Sometimes he can’t…impulse control issues, you know. But regardless of the reasons, her anger was justified. And she retaliated with angry words.

Oliver is stupid!

And a few minutes later, I heard the yelling and that word, “No YOU’RE stupid! No YOU are because YOU don’t listen. STUPID!” Stupidstupidstupidstupid….

So I sat them down, listened to sides, dried tears, defined words, explained cruelty, demanded reciprocal apologies…and ignored the ice that pierced my heart with that awful, everyday word that I misuse all the time.

We NEVER say stupid. It’s not nice. It hurts feelings.

Minutes later another squabble erupted, and this time it was Oliver calling his sister stupid. It was the first time I ever heard my sweet boy say that word, let alone say it about someone.

There were more tears and unreasonable behavior. Then arbitration. Then defiance.

Then Chris came in, saw all of the ugliness and disrespect for parental authority and sent everyone to their rooms.

This wasn’t a wrong thing to do, of course…but in this particular situation, with these particular children, it wasn’t the right thing either. So we gave each other the “okay, what do we do now?” look, and began damage control.

Since Chris administered the time out, I asked him to go talk to Oliver. Time outs don’t work with our oldest – and if I went to talk to him, then I would just be cast as the one who saved him from that mean asshole, Dad. They needed to work it out on their own. So I went to Eleanor.

She cried and explained. And I listened and agreed. But then I explained (and tried not to cry). And she listened. And finally understood. Why we never say stupid. Because it hurts feelings.

Later Chris told me that Oliver actually asked him, “Daddy, am I stupid?

How do you continue to breathe when your special needs child asks you such a loaded question? How do you answer?

For the first, it takes a lot of effort. For the second, it’s as natural as breathing.  You say no. “No, you are not stupid. Never think that. Never worry about that. You are a very smart boy.”

And Oliver isn’t stupid. So that’s not an ambiguous response. It’s the truth.

But the rest of the truth is, he is different. He doesn’t learn the same way other kids do. Simple Kindergarten crafts are often difficult for him. He has a hard time sustaining the appropriate level attention. He falls behind easily. And he’s starting to see all of this.

During parent teacher conferences last November, I (again) brought up the issue of holding Oliver back a year. He’s currently in first grade and I was astounded that they didn’t think he should repeat Kindergarten. In fact, I would have objected if he wasn’t in a K-1 class. Knowing that he’d be in the same classroom and would spend close to 30 hours doing one-on-one work with a special ed teacher each week, made me feel comfortable with the decision. The only difference would be a label: “first grade.”

But now it’s February. And he’s so obviously not ready to move on to second grade, no matter how many hours he may spend in a resource room. He’s barely working on a first grade level, let alone second grade.

Don’t you have to master a skill set before moving on to the next level – the next grade?

Apparently not.

When I broached this topic, and questioned whether children simply “age out” of their classroom, I got the shocking answer that, yes – in fact, they do. And I suddenly understood what I’ve been hearing for so long. Why people have been talking about kids being pushed through the school system. OF COURSE no one was suggesting that my son repeat a year. All of this time, I’ve been missing the point.

The school’s goal is to advance students through each grade, giving them the support they require to reach their highest potential. And there is nothing wrong with that.

The only problem is that I may have different expectations for my own child’s potential.

Listen – I know that teachers care. I’ve seen this first hand. There isn’t one teacher, classroom aide or therapist working with Oliver whom I don’t implicitly trust to have his best interests at heart. In fact, I would go so far as to say that they love my son.

But he’s my son. No one will ever love him like I do. No one will ever have his best interests at heart like I do. No one will ever see as much potential in him as I do.

So it’s up to me.

There is only so much that his teachers can do. They can’t suggest that he repeat a year when the school system has created a means of him advancing through each grade with help. And now that I understand this, I know what I have to do to help them. Help them help him.

I don’t want Oliver to feel stupid. I don’t want him to think he’s stupid. And while I can’t control how he’s going to feel or think, I can help create an environment that will guide him to better self esteem. And the first step is giving him a little more time to catch up.

When he started Kindergarten, he could barely speak in full sentences. He would wander around the classroom, unable to sit still for more than minutes at a time. He hardly ever asked questions. He played next to other children, not with them.

All of that has changed. In only 16 months, he has accomplished more than I would have ever guessed possible.

His potential is vast.

I can’t predict what will happen next for Oliver, but I can do everything in my power to ensure that he’s given a chance. To see his own potential. To believe in himself. To never accept the label “stupid.”

It’s inevitable that my children will call each other names. And “stupid” is the least of it… But the implications of that one silly word that is misused and overused to the point of desensitization are far too harmful to be ignored by my family.

We never say stupid.

So I wonder where Eleanor picked that up anyway… School? Friends? Me?

Chris claimed it was a cartoon. He said that they were watching Tom & Jerry, and a female cat character – the object of Tom’s affections – said it. Jerry set Tom’s tail on fire during the cats’ date at a restaurant. And when the bewildered Tom wondered what was burning his girlfriend said, “it’s you stupid.”

I was skeptical. Such a common word…so easy to blame it on a cartoon. Far more likely for it to be something she heard at school. From a friend. From me.

But very soon after that, Eleanor was telling me about a funny cartoon she saw. Tom and Jerry…Tom was on fire…”it’s you, stupid.”

Huh.

Stupid cartoon.

We still let them watch Tom and Jerry. It’s not my favorite – but it’s the least of my worries. I can’t shield them from the word stupid. And cutting them off from television isn’t the answer.

Better to educate them. Help them understand why that word can be so hurtful. When it’s okay to say it…when it’s not… Let them know that it’s okay if they make mistakes – hurt feelings. We all do the best we can. No one is perfect. All we can do is try again…

Right now my job is to give Oliver a chance to catch up. Help him see his own potential. Keep fighting for him.

And I am so grateful for the teachers we have on our side. While their power has limits, I now know how I can help them.

In fact, I just met with them this week. I asked questions and they offered a meeting. There were a few things to discuss, and I brought up my opinion that he needs another year in his current classroom. That he’s not yet ready for second grade.

They said that it isn’t quite as simple a decision as it once was…that administration would have to be involved in the discussion…but that the situation and the student in question would be given consideration. And that there are a number of reasons why Oliver should be given this consideration.

I think that’s a good start.

They love my son. I know this. And it means more to me than I could ever express to them in words.

I hear it in the way they talk about him. Their pride in his progress. Delight in his unique personality. Admiration for his strength of character – his sense of self.

They like Oliver as much as they love him. And they tell me stories about him. Particularly ones that make them laugh. The most recent one came from his classroom teacher who has been with him since his first day of Kindergarten.

She asked me if he was eating enough for breakfast since he often tries to open his lunch bag when he arrives at school. She wasn’t sure if this was because he was hungry or if he just wanted to eat his snack. We all agreed that it was probably the latter. It was noted that he does like his salty snacks…

And apparently, he’s quite partial to the soft pretzels that they sell in the cafeteria. Not that he should even know about them since he doesn’t buy a school lunch… But someone obviously shared a pretzel with him at some point because he does know about them. And he really likes them.

In fact, according to this teacher, Oliver must have made a friend who works in the cafeteria who also knows this about him. Because regardless of the fact that I have always packed a lunch for him – have NEVER sent money for the school lunch – several times a week, she will look over at his table to find him enjoying his own soft pretzel. The ones that you can purchase in the cafeteria lunch line.

So several times a week, my son who has these delays and IEP goals to improve his ability to communicate and relate to other people charms someone into giving him a free salty snack.

Smart boy.

And Then I Started Watching The Walking Dead

It’s been a while since I’ve posted anything here…

I was busy with family in town over Christmas, and assumed that I’d be back to wish you a Happy New Year on January 1. Or at least by January 7.

What’s that? February is right around the corner? I noticed that too. And for the life of me, I don’t know why I’ve been so resistant to the idea of just writing something already.

Or actually – I do know why. I have been experiencing an unusually high level of anxiety lately. I say “unusually high” because while I admittedly always have one toe on the ledge, OHMYGOD who AM I and WHERE did my talent for dissociation go? Every morning I wake up feeling paralyzed – only propelling myself into motion because three small people require it of me. Luckily, it gets better as the day goes on and the beds get made and small tasks are accomplished. And exercise helps. And Prozac.

But it’s not normal. I haven’t had this deer caught in headlights perspective since my brush with PPD after Oliver was born. I remember that well. I also remember coming back to reality and thinking, “what the hell was that?” Unfortunately, knowing that I’m on the wrong side of the looking glass doesn’t make it feel any less dark.

This has been going on for well over a month. Or at least it was. Because a few days ago, I started watching a TV show about zombies.

If you know me well, you will think this is incredibly out of character. Because I LOATHE everything about the horror genre. Especially anything having to do with The Undead. I have never understood the appeal. Why is “scary” fun? What is it about grisly scenes of fictional carnage that make people shiver in delight?

You’re gathering a group of friends to order pizza and watch The Amityville Horror on Halloween night? Me? I’d rather give your grandpa a pedicure while watching back to back episodes of the Power Rangers.

So The Walking Dead isn’t a show that I would have expected to watch. Like – ever. I mean, post-apocalyptic terror CAN’T be good for my psyche on the best of days…

But the other night, when Chris and I sat down for some necessary escapism via Netflix streaming, the options were limited. Chris didn’t want to watch anything BBC or Sci-Fi (or Sci-Fi BBC) and I wasn’t up for action hero movies. Then we happened upon The Walking Dead, and in some weird combination of Chris’ friends telling him how good it is and my recollection that Tom and Lorenzo always write about it (I love their TV recaps), I lost my mind entirely and watched the first two episodes.

I’m surprised I survived.

But here’s the weird thing – as much as it kind of makes me want to light the television on fire and throw it out the window (don’t worry, this will never happen – I’m not crazy…and we only have one TV), this horror story that comes straight out of my worst nightmares has done wonders for my anxiety.

I mean HOW can you possibly see the current world as a bleak and depressing place when you hold it up alongside one where dead people roam the earth sniffing around for living flesh to devour? My life may have its challenges, but it’s not that bad.

So is that all I needed to snap out of my funk? A zombie intervention? Probably not. These things ebb and flow on their own. And as with anything else, there are other factors at play. I have a new project that has been incredibly motivating…I’m feeling so hopeful about the progress that Oliver has made this year in school and what that might mean for his future… More and more, I find myself spending less time worrying about what might happen and more time looking forward to all that is possible.

So I’m not giving The Walking Dead full credit. But I’m also not undermining the power of a reality check via bloodthirsty corpses. Either way – it makes me feela lot less anxious about the bad economy.

Happy New Year!

 

Living the Dream

While I was pregnant with my first child—my special needs child, Oliver—I had this little thing I would do every night before going to sleep. It wasn’t exactly a prayer, or even some intentional form of magical thinking…but I would reflect on everything that I wanted for my baby. It was more of a list than a litany, but it still had that rote quality of repetition.

I would add to my list now and again, but for the most part, it didn’t change. I hoped that he’d be kind and generous, funny and handsome. I also wanted him to be earnest, self confident, intelligent, creative. And happy. I dreamed all of this for him and more. Because that is what we do as we sit in the waiting room outside our future as parents. We dream.

And when he was finally born, I couldn’t imagine a more perfect baby. At nine pounds, he was chubby and healthy. And I was terribly offended by the nurses’ exclamations of “Oh, he’s a BIG boy.” There is nothing big about nine pounds. He was tiny and precious, and it was my job to shield him from the dangerous world.

During those early months of taking quiet walks outside and letting him sleep in my arms, this level of protection seemed entirely possible. It’s a brief moment in parenthood that we often forget to treasure as we learn how to function on next to no sleep. It’s the first and last time that we will ever truly be able to stand between our child and…everything. It’s a simple “just you and me” time when the rest of the world disappears. A sweet symbiosis.

Oliver was a very typical baby.

Of course, he had his challenges. Like not sleeping though the night until…EVER. O.K., that’s not true. He got better after the first year, but let me tell you—I can name most of my wrinkles: “Oliver, April 5, 2005,” “Oliver, April 6, 2005,” “Oliver, April 7, 2005….” And he did go through that annoying Daddy’s Boy phase when he preferred my husband to me. Such betrayal. But all in all, he gave me every reason to be a very smug mommy. A few minor details aside, he was everything I dreamed about.

So when did we notice that something was “different?” It’s hard to say since it was all so wrapped up in the craziness of a surprise pregnancy that ended up being twins born 18 months after I had Oliver. Like any “normal” 18-month old, he wasn’t thrilled about two tiny creatures intruding on our perfectly lovely little family of three.

I use the word “creatures” because I got the impression that this is how Oliver viewed them. Even my healthy 5.5-pound twins were pretty scrawny looking. They certainly didn’t resemble any baby Oliver had ever seen before. In fact, I think I can pinpoint the moment when he realized exactly what was going on with these new “pets” of ours. I was changing a six-day-old George’s diaper when I caught Oliver staring intensely at this activity that he must have observed at least ten times a day at daycare. And it was like I knew what he was thinking: “Is that a BABY?!”

I couldn’t blame him, really. I, myself told people that taking care of the twins sometimes felt like playing with Barbies. And that with their little C-section legs curled up all “knee to chin,” it was “like changing kittens.” A very different experience from my chubby first born.

Then time passed. We all survived. Adapted. Became a family. And in the midst of all of that, we discovered that Oliver was not going to be the average, everyday big brother.

Some of my family members were shocked by how our friendly and engaging little guy had suddenly become so closed off and threatened by new people, places and experiences. And as he approached age two, it was obvious that he was not speaking nearly as much as other toddlers his age. People started talking to me about having Oliver tested.

The truth is, all of that really could have been chalked up to the major upheaval in his previously peaceful little life (did I mention that we moved to a new house three weeks before the twins were born?) And I have never been one to obsess over timelines.

I didn’t want to be that competitive mom, pushing her kids to be the best at everything. So his speech wasn’t progressing as quickly as other toddlers I knew…my brother didn’t talk until he was two!

But as Oliver’s second birthday approached and he had months of time to get used to his younger brother and sister, it seemed more possible to me that this might not just be a reaction to change.

Something was wrong. Or wasn’t right. Or wasn’t normal. Or wasn’t “typical”—the PC term that I would soon learn to use when discussing the differences between my child and others. So we had him tested.

It took years before we finally had a handle on what is going on with Oliver.

We got him into a full-time special needs preschool program through our county. We found him a neurologist. Then we consulted a pediatric psychologist who gave him an Autism Spectrum diagnosis (PDD-NOS or Pervasive Developmental Disorder – Not Otherwise Specified), something pivotal to getting him as many services and therapies as possible through the public school system. We sent him to occupational therapy (speech wasn’t covered by our insurance since it wasn’t “restorative”) and enrolled him in a social skills group. That last one ended up being a huge waste of time and money, but I did make a wonderful friend in one of the other mothers there. I like to say that I paid $2,000 for her.

We learned more and more about our son through trial and error. And the only thing I found perfectly clear was that Oliver wasn’t like other kids. My friend, the $2,000 one, has a PDD-NOS boy herself and jokes that it means, “There is something wrong with your child…but we don’t know what is wrong with him.” It’s very frustrating. And so much more common in special needs kids than one would expect. There isn’t a finite label or diagnosis for everything.

Like all other parents in this position, we tried a lot of things, and we learned to accept that there are no easy answers, no single set of directions to follow. We were muddling through like everyone else. Looking for anything that would help Oliver learn how to speak in more than three-word sentences, answering only “yes” or “no” while the other four-year olds were asking “Why?”

And during that time, we were raising a handsome, quirky, delayed boy who was still everything to me that he was as a newborn. Perfect. Mine to protect.

He deserved more than the necessary search for answers and helpful therapies. He had so much to offer us just the way he was. So much to teach. I doubt that there is ANY parent of a special needs child who doesn’t claim to be a kinder, more tolerant person now.

Oliver taught me to take my dismissal of hard and fast developmental timelines to a whole new level. I celebrated every milestone and triumph, and didn’t immediately move on to anticipate the next one. I started living more in the moment and appreciating each day as it came to me.

I watched him play with his younger siblings and enjoy their companionship. It was clear that he thought they were the best friends to be found. He never pushed them aside to follow the older kids in the neighborhood.

He was (and still is) so true to himself. I don’t think I’ve ever seen him express concern over other children not approving of his preferred games and activities. At age six, he still loves Thomas Trains. If other six-year olds think trains are for babies? Fine, more trains for him. As much as he may want to be part of the group, he won’t sell out. But even more importantly, he doesn’t judge anyone else for their own preferred pastimes.

And when Oliver actually does say or do something intentionally funny? It’s like he knows. He looks at me and it’s so clear that he gets it. That he’s different and that it’s O.K. Even kind of great. And we have a moment of looking at the world through the same eyes. And laughing about…all of it. I love that.

These kids know so much more than we realize. By operating on a different frequency than others, they often catch things that the rest don’t. So many times, I’ve been smiling and laughing, and Oliver will look at me with obvious anxiety over the sadness or worry or anger that I’m feeling underneath it all. I’m a pretty good actress if I need to be. But he sees through me. He knows.

One of the greatest gifts I have ever been given is Oliver’s ability to talk to me; to have real conversations. Through a combination of auditory processing therapy and sensory integration therapy (two alternative approaches that we’ve discovered over the past couple of years), Oliver has started really talking. In full sentences. In conversations initiated by HIM.

This may not sound like much, but for us, it is monumental. To be able to talk to your child about their thoughts, feelings, wonder about the world…is basic to building a mature relationship with them. So to hear Oliver express why he’s angry or frustrated is like a miracle. It doesn’t matter if his “feelings” conversations aren’t exactly complex, because for the first time ever, they’re clear.

I love Oliver. He looks at the world in a way that no one else does. He marches to the beat of his own drummer.

It’s so easy to get mired down in the testing and therapies and worries of your special needs child. And to a certain extent you should. It’s your job. But there is also so much opportunity for pure, visceral enjoyment of them.

When I had my baby, I wanted everything for him. And now, six years later, I see that it is he who is giving everything to me. He is every single one of the dreams that I had for him.

He’s handsome and funny, kind and generous. He’s intelligent, self-confident and creative. And so earnest in how much he enjoys his life. He is happy.

I will always try to help him have the best life possible. I’ll dream more for him than could ever be possible. Because that’s what parents do. But I’ll never worry about whether he can realize all of my dreams for him. Because he already has.

Originally posted on Health News HERE.

Dynamic Family Dynamics

1/17/14

This post was originally published on The Squashed Bologna in October 2011. I came across the link and decided to retroactively publish it here too. Hard to believe that was over two years ago…

Dynamic Family Dynamics

Often when asked about the level of chaos and drama in my house, I’ll say that “I have a special needs child, an explosive child and a girl.” That pretty much sums it up.

But let me backtrack a bit.

I have three children – Oliver, my six year old, and George and Eleanor, my five year old twins. And just in case you’re wondering – no, that age difference was not planned. Nor was the two-for-one pregnancy. But no matter how dramatic and chaotic it may be, I never lose sight of how lucky I am to have these three entirely unique people in my life – to be able to watch them grow.

Like any other parent, I once looked into my children’s newborn faces and dreamed about their futures. I imagined them as happy and healthy kids. So close in age, they would be friends. They would grow up together and then go on to attend college, find careers… have families.

I always knew that they were really just on loan to me. I would raise them, but they would eventually leave to find their own way in the world. And I looked forward to watching it all unfold.

We had some basic expectations for the roles they would play, of course. Oliver would be the big brother, and look out for his not-that-much younger siblings. Eleanor would be a daddy’s girl because they all are in my husband’s extended family. George would be the middle child – even though he is only a minute older than his sister – and as a loud and demanding infant, he seemed destined to be a handful.

And some of this ended up being true. Eleanor is a shameless daddy’s girl and George has taken the term “handful” to a whole new level. But Oliver is not your average, everyday big brother. He is my special needs child.

The twins were born when he was 18 months old. And around that time, it was becoming obvious that he was different from other toddlers. His speech wasn’t developing with the lightning speed that I witnessed in other kids. He wasn’t as social and trusting. He was more interested in throwing blocks in than he was in using them to build towers.

Years later, after special needs preschool and various therapies, Oliver is sweet, handsome boy with severe sensory processing disorders. He also has an Autism Spectrum label: PDD-NOS (pervasive developmental disorder – not otherwise specified).

The behaviors and challenges that qualify him for a Spectrum label are primarily noticeable in his communication and language skills, but he also has some more subtle problems with motor skills. We’ve been lucky to find a couple of alternative therapies that have been nothing short of magic as far as I’m concerned. And Oliver is always making progress – moving forward. But it’s never fast enough for him to catch up to, let alone keep up with, his peers.

And it’s not just other kids his age anymore. Oliver is now officially behind the skill levels of his siblings. Over time, George and Eleanor have become my barometer for what Oliver will hopefully learn how to do.

People are confused by our oldest son because he “looks normal.” But they haven’t witnessed Oliver’s daily struggles with things that have come so naturally to his brother and sister. Like sustaining conversation, understanding the rules in games and making friends. They don’t understand why it’s George who plays light sabers with the older boys across the street while Oliver plays with Thomas trains in the dirt. It should be the other way around, right?

They also have no idea how incredibly painful this is to watch.

For all of my love for them as individuals – all of my gratitude for their health and happiness – it breaks my heart to see my oldest fade into the background while his younger brother and sister become such stars. To see the babies of the family take over so many of the older sibling roles that should have been Oliver’s, by right.

And I know that sounds petty and unfair – to expect that the oldest would automatically be the front man for the band…the leader of the pack. But that’s the typical family dynamic, right? And didn’t I expect to have a “typical” family? Didn’t we all?

So my husband and I have had to put aside some of our new parent dreams and expectations for our children – our family. It was hard. And sometimes I still feel a little sad. I worry.

I worry about the near future when the twins start asking questions about why they can do things that their big brother can’t. So far, they haven’t. They don’t compare our family to others. It seems normal to them that George is the one who complains about Oliver messing up his…whatever it is he’s doing (remember – George is my explosive child, and there’s always a crisis). Or for Eleanor to act as spokesperson for her big brother when people ask him questions he’s not yet developmentally capable of answering.

But as we become less insular and spend more time with the rest of the world at large, it’s inevitable that my two younger children will wonder why we’re different from other families.

To be perfectly honest, I’ve avoided thinking about this for a long time. On some level, I’ve been wishing that Oliver would just become “normal enough.” That therapies and IEP reports aside, the kids in our neighborhood – and George and Eleanor – would see him as just another kid. Maybe a little goofy or quirky sometimes – but not so much that he couldn’t fly under the radar.

Then maybe someday when Oliver would be capable of engaging in a complex discussion, we could all talk about his personal challenges. Together as a family – with Oliver participating in this conversation about him.

It shouldn’t matter, I know. But I just really hate the idea of talking about Oliver to his siblings before I can talk to HIM about everything. I would feel like a betrayal. Like it was now me denying him his right to be the older brother.

I may have to do that someday – but I’m not ready. Not yet.

In a way – these ideas are entirely new for our family. We haven’t had to think about them.

So I don’t have personal stories to tell about how our children work around the special needs that make Oliver different from other six year olds. As of yet, the twins don’t really recognize that Oliver is different. He’s just Oliver. And I’m selfishly holding on to that as long as possible with no plan for the future.

Until now, I guess. Until I began writing this and reading about the experiences of other families with “special needs siblings.”

I’ve written numerous posts about Oliver’s special needs on my own blog, but this is the first time that I’ve actually addressed the issue of how those special needs affect his relationships with his siblings. And because I’ve always taken the Scarlett O’Hara approach of dealing with what I have to today, and leaving the rest for tomorrow – I’m now in uncharted waters.

I love the idea of Oliver being the big brother an taking care of his little brother and sister. But for now, and possibly for a long time (possibly forever) that’s not going to be our reality. In a couple of years it may be the younger brother and sister standing between Oliver and bullies on the playground. It’s still too soon to tell – but not so far off that I can’t imagine that possible future.

Will they stand up for Oliver? I think Eleanor would. As a girl, she has an innate maternal side. She seeks to nurture in a way that her brothers just don’t. But George? I don’t know about George.

He is so full of enthusiasm for life, that he doesn’t always notice other people as he races to grab the brass ring. He means well – but he’s a scrapper. He may unwittingly trample Oliver in his efforts to follow the older boys with their war games and skateboard ramps. I just don’t know.

But I do know that this is going to be painful at times… and I would be lying if I said I wasn’t terrified by the uncertain future. That I didn’t wonder how many more of my dreams that future will will steal from me.

But I find great comfort in the fact that some of my dreams are already coming true. My children are happy and healthy. They are friends. They are growing up together. They may or may not all go to college, but each one of them can find a purpose in life – something they can consider their career.

Probably the most important dream I have for them is family. The families I once imagined for them included marriage and children. And right now I have no reason to doubt that this is possible for them. For all of them.

My dream of them all having their own families might actually come true. And it might not. But it doesn’t matter because whether they get married or not – have children or not – they will always have each other.

They will always be a family.

Hope Hurts

A while ago, a friend of mine wrote about how mothers of autistic children cry all the time. She explained that the tears of happiness are just as plentiful as those of sadness. And to be honest, I had never really thought about it before.

After considering this idea, I decided that I almost never cry about my own “Spectrum” son, Oliver, unless I’m happy. And I wondered why. Why would I be more likely to burst into tears over one of Oliver’s triumphs? I’m not exactly known for being particularly emotional or effusive. I never cry at weddings. Expressions of love from family and friends make me smile, not tear up. I don’t really cry that much in general.

I’m definitely one for the frustrated tears though. It’s the reason why my children refer to my recent attempt to travel solo with them to Florida as “Remember that time you cried in Key West?” So wouldn’t it make far more sense for me to fall to pieces when faced with adversity?

And maybe that is the case most of the time…but not when it comes to Oliver.

I literally can’t think about scary “what ifs” when it comes to my son. If I allowed myself to actually go there…to imagine the worst…I wouldn’t be able to function.

We all have different reasons for our emotional reactions. We’re different people—our special needs kids have different challenges and levels of potential. We adapt to all of that and don’t look back. Or at least we try to focus on today. We don’t make plans for a future if it seems uncertain.

Certainty plays a significant role in the emotional life of a mom with a special needs child.

Some know exactly what the road ahead holds for them. I recently read a heartbreaking accountof one mother’s sorrow over her severely bipolar son’s life as “Pinocchio.” She only gets to see him as “a real boy” a few times a year, when his true personality randomly—miraculously—emerges to initiate meaningful conversation. To hear him talk about his hopes and dreams is a gift that comes with the terrible price of knowing the truth. She knows that he will always be dependent on her. She knows that he will never get married or have children. She knows that she will have to live for mere moments in her relationship with him. This certainty hurts.

But others—like me—don’t really know what the far future holds. We are allowed to dream a little. Or a lot…

Oliver’s processing disorders make him very delayed, but slow progress is better than none. I see how different he is from the other kids his age—and that’s hard—but I also see how different he is from the boy he was last year. He speaks in full sentences now. He doesn’t roll around on the floor while the teacher is reading a book (or at least that’s what she tells me). He’s more interested in other people. He wants friends. He participates in the world at large.

So I focus on that. I compare him only to himself. And as I marvel at how far he’s come, I assume that he will continue to achieve. That he’ll eventually catch up. I fervently hope that this will happen when he’s young and won’t remember being so different. As a six year old, he views others through his own eyes. He doesn’t view himself through theirs.

I rarely imagine what life will be like if this doesn’t happen. It hurts too much. Uncertainty has it’s own price.

Instead, I conjure clear images of the near future; of him learning to read and being able to have real conversations with friends. I throw money at therapies that seem to work for him. I look him in the eye and tell him he’s totally weird, and that I like that about him. I’m fairly certain that he won’t eventually grow out of his quirkiness. So I want him to embrace it, see it as something that makes him, “him.” I imagine him a little older and a lot more confident, possibly befriending other kids who seem a bit lost.

I hope a lot. And I believe that it’s all possible. That anything is possible.

And that hurts. Because if anything is possible, then it might not work out the way that I’d like it. He might not catch up. He might not be confident or embrace his otherness. Or he might never see the difference and just feel like an outsider

Every day, I encounter lovely people who are just a little strange. They seem to be off tempo with the rush of humanity swirling around them. They miss beats, they smile too wide. They seem somewhat odd and make others feel slightly uncomfortable. And I do what we all do. I smile back. I respond positively to their a-bit-too-muchness. I’m kind. I set a good example for my children.

I don’t like to think about the fact that an uncertain future may hold something similar for my own son. The image of him being someone who inspires people to be kind in spite of their discomfort shouldn’t make me sad…but as long as there are other possibilities, it will. If this is what the future holds for him, we’ll all be fine, and we’ll be happy. But for now I just hope for something else.

My heart clenches when I think about those “what ifs.” And I do feel some guilt over this because I am SO LUCKY to have been given the option of hoping and dreaming for my child—a very basic element of parenting that’s not afforded to all. And as much as I may have more worry and heartbreak than some parents of typical kids, there are just as many who would take offense to my attitude. How dare I feel anything but grateful for a sweet, loving boy with all of this potential? He smiles at me. He talks to me. He can run and play. He’s healthy.  He’s alive.

But in the darkest corners of our hearts, we allow ourselves to be selfish, to want more, to push aside gratitude and make way for secret fears.

This hurts more than anything—to hope so much, knowing that it may be for nothing. To feel the shame of not fully appreciating the gift of a precious child—my son who has made me a better person for knowing him.

So I don’t give the scary “what ifs” very much of my attention. I acknowledge those feelings from afar. Then I stuff them in a box and place them out of sight. I focus on my hope.

I don’t cry when I see Oliver struggling with words that come so easily to his younger brother and sister. I don’t cry when I see work coming home from school that is so obviously behind what he should be able to do at his age. And I absolutely DO NOT cry when he does. I smile and help and tell him he can do it. That it’s O.K. It will all be O.K.

All the while, that box or fear and worry and sorrow and anger fills up. And it gets harder to swallow the lump in my throat, to draw air into my lungs when it feels like all of the oxygen has been sucked out of the room. To move when I feel paralyzed at the sight of demons lurking in our uncertain future.

And then something wonderful happens. I see him playing a game with other kids, maybe even leading them for brief moments. Or I hear him singing a recognizable song. I witness him correcting his father’s misstep in complicated Lego construction, actually saying “No Daddy, that’s backwards.” To be given a view into the future reflecting all of my hope brings tears to my eyes.

I can cry tears of happiness when my hope is validated. It’s safe to open the box and air out my fears. I can let myself cry when I’m happy, when I know that I’ll be able to stop crying.

And that is why. For me, there is no option of angry or defeated tears. I simply can’t go there. If I did, I don’t know if I’d be able to come back.

And I’m needed here. My hope is important. I believe in the power of it. I will make good things happen through sheer willpower alone. At the very least, I’m going to try.

So if you ever see me crying over my son, yes, there are a lot of emotions involved and I’d be lying to say that they didn’t include the dark and scary ones. But I’ll be smiling. And I’ll be hoping.

Originally posted on Health News, HERE.