A few weeks ago when we were in Rehoboth Beach, my mother in law and I packed up the kids to drive over to Bethany where one of my friends has a house. She and her sister were staying there with their five children, four of whom were boys.

Once we all found each other, we spent most of our time by the water. We stood sentry watching all of our boys hurl themselves into the surf. And we counted heads in the foam while trying to hold a conversation between exclamations of “don’t throw sand!” and “that’s too far, come back here!”

My boy was right in the middle of this. This sensory overload of wind and water and squishy, grainy sand between his toes. He was in his element – in the elements. He needs to feel things and he needs to immerse himself in the moment without inhibitions. And what better place than the beach?

He also loved being in the middle of all of those boys. They were his people. They understood the joy of throwing wet sand in the air just to feel it splatter all around them. They wanted nothing more than to live in that moment with the waves crashing around them, drowning out the sound of their screams of laughter. They were just like him.

In that moment.

But only in that moment.

They called to each other and knew when to push and when to pull. They knew when to stop and when to start again (obviously when mom was looking the other way). They understood the rules of the game. They both made and discussed the rules. In bits and pieces of course – but still, they communicated. Communication came easily to them.

Communication does not come easily to my boy. He doesn’t know when to stop. He doesn’t know when pushing isn’t welcome. He doesn’t know the rules. He doesn’t know how to join. He wants so much to join – to play. But he doesn’t know how. So he just watched.

And I watched him from behind my sunglasses, happy to see him having fun even if it seemed a little lonely. Happy that he couldn’t see the tears welling in my eyes. Happy that my friend couldn’t see the tears either and only heard me talking about doctors and school and how well he’s doing. Because that’s really all I want anyone to see.

When I was a teenager, all of my friends wore sunglasses. but I never did. I didn’t like them. They gave me “raccoon eyes” in the summer and felt out of place with my coats and hats in the winter. Not to mention the fact that they never did look good on me. Back then it was always about how I looked.

Now I’m the one doing the looking. I don’t care as much about how I look. Sunglasses will never compliment my face with its long, slightly crooked nose – but I need them to see my children through the glare. I need them to see the road when I’m driving on a sunny day. I need them to be responsible. So I wear them. And I’ve found that they are pretty useful. They allow me to be the observer and they can hide what I don’t want people to see.

I also wear my sunglasses at the neighborhood pool where I take my children most late afternoons. After the twins wake up from their nap, I load up all of our towels and waters and changes of clothes and snacks and push the double stroller uphill, calling for Oliver to wait for me at the corner. Which he always does – but I ask him to anyway, just in case.

When we arrive, we head straight for the baby pool. At two, the twins are still too little to stand in the shallow end of the big pool like their four year old brother. This suits me just fine since Oliver is still young enough to be satisfied with the baby pool and I can sit with a magazine while they play. Or at least I can for a few minutes at a time, since I frequently have to administer warnings and time outs for bad behavior.

One thing I like about this time of day is that the pool tends to be rather deserted. More accomplished mothers are thinking about cooking family dinners at 5 p.m. My children will only eat kid food and my husband and I don’t usually have formal meals together due to all of the corralling required before their late, but “works best for them” bedtime between 8:30 and 9:00 p.m. When no other families are at the pool, only our own rules apply.

If Oliver is splashing, I can ignore it. That is, as long as his siblings don’t mind. And they often join in. If Oliver is being too rough and pushing them as part of some inexplicable game of his, I can just watch and see how it goes. I don’t need to stand or look alert as a show for the other parents. I can see just fine from my shady seat. My sunglasses cut the glare. Everything is crystal clear and I know exactly when to step in and when to let them work it out.

But more often than not we arrive at the tail end of another family’s pool time. And I have to stand and administer twice as many time outs as I would if we were alone. I have to find ways to tell the other mothers that Oliver has a hard time knowing when to stop. In Oliver’s mind, if another child seems to like being splashed at from across the pool, why wouldn’t they like it at closer range? And at that point, why not cut out the middle man and just shove them back into the water? Sounds fun to him!

So I can spend an hour having the same one-sided conversation with him over and over. Telling him to stop. Asking him to be gentle. Pleading with him to listen.

He wants to comply. I know he does. He wants to please me and he wants to please these desired friends (he has the makings of “a pleaser” – something else that worries me – but that’s another concern for another day). He wants to get it right. He just doesn’t know how.

I always keep my sunglasses on when we’re at the pool.

The other day, a few kids a year or two older than Oliver were in the baby pool during adult swim (everyone seems to call it “break” now – is “adult swim” no longer PC or something?) Anyway – they were being rowdy and Oliver was thrilled. They were pulling out the hose that was supposed to be filling the pool with more water. They were spraying each other with it and splashing and eventually ran to get their water guns.

As they stood there spraying each other and yelling unintelligible things about Star Wars, a movie that I doubt any of them has actually seen, Oliver decided to join in.

It didn’t work. He didn’t know the rules.

He splashed around in the middle of them when no one was splashing. They asked him to stop, but he didn’t understand. If they were shooting water at each other, then why wouldn’t splashing be allowed? A younger sister in the group, exactly Oliver’s age, explained, “we’re playing Star Wars now – you can play Star Wars too, but you can’t play with us if you keep splashing.”

So of course I had to intervene.

At this point, I didn’t think I had ever said, heard and thought the word “splash” so many times within the space of five minutes. It had completely lost all meaning and was just a rude noise that made me feel decidedly uncomfortable. It was an expletive. A swear word. I wanted it to not exist anymore. I was done with it.

But Oliver wasn’t. He didn’t understand, and I had to pull him aside. No time out though. How could I when he had only the best of intentions? Instead I offered to drag him around the other side of the pool. Something he loves and I hate. He loves the feeling of the water rushing all around him from head to toe. I hate the feeling of hunching over to pull a 60 lb. four year old from one end of the baby pool to the other.

Meanwhile Star Wars continued, Oliver still didn’t understand what was wrong with “splashing” (excuse my French) and I hid behind my sunglasses.

And I made plans.

Apparently shooting water at each other is generally okay at the pool. Or if it isn’t, it’s not unusual for kids to not know when to stop. Quite simply – it’s not weird.

So while I pulled Oliver around the pool, I made plans to take the kids gun shopping the next day. We didn’t own any water guns, but we would soon own an arsenal.

Oliver could learn to shoot a water gun. And the next time there was a game of Star Wars at the pool, we’d be ready. You don’t need to have good communication skills to play shooting games.

I never thought I’d like sunglasses. And I never thought I’d encourage my children to play with toy guns. But I guess I never thought I’d be doing a lot of things.

I have a friend who also has a son with special needs. His are very different from Oliver’s but there are so many parallels to our lives… I love this girl. She speaks my language. The language of mother grief. Of future worry. She worries that her son will wear all black and write dark poetry about death and Japanese anime. I worry that Oliver will be Tommy Boy. We have to laugh. It’s necessary – and we both understand this.

It’s nice to be understood. And that’s probably what most breaks my heart about Oliver. No one really understands him. So I’ll give him a water gun if that helps. And I’ll laugh, and I’ll hope. And I’ll always wear my sunglasses. Just in case.

*Oliver is starting Kindergarten on Tuesday, September 7th, and I’m devoting this and next week to posts I wrote about him and his special needs. It helps me to re-read these and see how far we’ve come. It gives me even more hope for the future and reminds me of why I’m so proud of my son. Worry about the future will always take a back seat to that feeling. I wrote this one in August 2009.

This statement in and of itself isn’t exactly earth shattering – at least not to my husband… I’m actually quite the cry baby when I’m really upset.

But the truth is, I’m not “really upset” very often. I’m one of those even keeled types who needs time to process bad news before reacting to it.

I’m also an excellent companion in an emergency: “Oh dear, it appears that your arm just fell off…why don’t you call 911 while I get some ice…”

No – I’m not one for the drama. And if there is one thing that I NEVER cry about, it’s my children. Oh sure – a stray tear escapes here and there as the result of pride or nostalgia. But never tears of sadness.

I’m just too lucky for that. I have three children while many have none. My children are healthy, they are kind to each other and they are loving to us. And at the end of the day, they are here. I have heard far too many horrible stories about the loss of a child to not appreciate that. Mine are here with me, and I can hug them as much as they’ll let me. For this I am truly grateful. I’m grateful every day for every day I have with them.

But yesterday I cried. About Oliver. And I feel the tears well up again as I type this. Because no matter how grateful I am that he is here, I’m also sad and worried.

I have to reiterate – I NEVER feel sad about Oliver, even though I’m very much aware of his challenges. He is four years old now, but his two year old siblings are quickly catching up with him in communication skills. Oliver has made so much progress over the past couple of years, and I am so, so proud of him. But he’s still so delayed… And I hate to see the puzzled expressions that other people give him.

Even more so, I hate to imagine what that will be like when he’s older. I wish he wasn’t the big brother. I’d like him to have a sibling who could stand up for him on the playground. Because I can’t. Aside from the fact that I can’t always be there – it would just humiliate him to have mommy fighting his battles. I can only hope that his size (he’s HUGE) will work in his favor. If some smart ass bully starts in, Oliver can just sit on him.

But his size isn’t just a joking matter. It’s ANOTHER concern. People think he’s older than just-turned-four. And because of his delays, he is far more like a just-turned-three year old (and one with speech delays at that). I worry about what this will mean for him in the long term. Will people always expect more from him?

But none of this is anything new. What really makes me sad is the fact that he now has a label.

We took him to a developmental pediatrician after meeting with a neurologist who couldn’t make an assessment (other than that Oliver didn’t appear to be mentally impaired, autistic, etc.). I mentioned this in a previous post. He recommended this particular developmental pediatrician and after a bit of a wait, we had our appointment last week.

The doctor did play-based testing that is now very familiar to me and I could see the areas in which he was not “typical.” If not by his actions, by her reactions.

It was after a phone call from her yesterday that I cried.

She gave me the short version of his assessment, but then I got the official report via e-mail and cried again. It said that his “delays and quality of interaction and learning are consistent with a child on the Autistic Spectrum. Qualitatively I would label him as Pervasive Developmental Delay Not Otherwise Specified and meeting the following DSM criteria: delayed communication, delayed social interaction, somewhat restrictive behaviors and symbolic thinking.”

Here’s the thing though – how is ANY of this news to me? I know all of this about him. We’ve been working on it with his preschool teachers. I see it at home every day. He’s just different. Wonderful and amazing and miraculous as he may be – he’s still different.

I’ve written about this before and was very clear about the fact that I don’t care if he’s different. I love him for exactly who he is – quirks and all. So I wasn’t upset to hear more about what I already knew.

I think that the real reason I was so upset by this news was that Oliver was finally given a label. A label that doesn’t say that he’s wonderful and amazing and miraculous. Only that he’s different. A label that changes all of the “what if” questions into “if then” statements.

This is a good thing – to have concrete “if thens”. If Oliver is on the Autism Spectrum, then we have a direction to take with his treatment. If Oliver has an actual diagnosis, then he will qualify for all sorts of special services that we would never be able to afford otherwise. If Oliver has a label, then we can give others an actual reason for why he acts far younger than his age.

But if Oliver has a label, then all of this is real. It won’t resolve itself or go away.

The report says that his label is “qualitatively” based on his behavior. And I know that no matter how much help he gets, he will never “qualitatively” be like other children. This is just the way it will always be.

And while I still wouldn’t change him and I still think he’s wonderful and amazing and miraculous, I am now feeling sad and worried. To some extent this is also the way it will always be. And I suppose I wouldn’t change that either.

My love for Oliver and my appreciation for his fabulous individuality is a constant. One that can’t be affected by any amount of testing or labeling or restraining myself from physically assaulting playground bullies who try to pick on him. It will never change.

I know in my heart that Oliver will be okay. More than okay – I mean how could he not? We’ve already established that he’s wonderful and amazing and miraculous. But sometimes I will be worried. Sometimes I will be sad. And sometimes I will cry.

No matter what though, I know that I will always be proud of him and I will never want to change him. And that is exactly how I know that I will be okay too.

(then a few days later, I wrote…)

It’s Okay – I Didn’t Jump Off the Ledge…I Just Climbed Down When You Weren’t Looking*

First of all, I’d like to say that I really have meant to personally respond to all of the kind comments left on my highly dramatic mind dump last week. But time has gotten away from me – so it might take a while.

Needless to say, I am feeling much better now.

The truth is – nothing has changed. But we now have a “point A” from which to work. “Point Z” is very far down the road, a road that I’ve heard is a hard one at that. But it’s far from being the one less traveled. Many people out there with similar experience have offered advice and encouragement, as well as tan, toned virtual shoulders to cry on (is it just me, or does everyone else have a much better body online?)

That said, I have learned a few things since my uncharacteristic breakdown last week:

1. It’s okay to feel sorry for yourself for short periods of time – but never longer than necessary.

2. There are always worse problems to have, so you have to focus on everything that is good and right about your lot in life.

3. Feeling sad is a waste of time unless you know WHY you are feeling sad – how else can you learn and recover?

4. Little pitchers DO in fact have big ears (though no one really knows what baseball has to do with anything) and if a child has a delay or disability, they are still far smarter and perceptive than you could ever know.

5. I often lose track of my thoughts and have no idea where I’m going with this list.

RIGHT – so I know that I had a point beyond platitudes…unfortunately, it now eludes me.

But what about Oliver?

He’s fine. In fact, he’s great. Still wonderful and amazing and miraculous. And still very delayed and on the Autism spectrum.

But like I said last week – that’s just a label. It defines his current behavior and challenges. But it doesn’t define him. And it certainly doesn’t define me.

I knew that things had shifted for me when one night in the dark, a disembodied voice (don’t worry – it was just Chris) asked me, “Oliver will be okay, won’t he?”

I answered without hesitation, “of course he will. Because I’ll make sure he is.” And I knew that was absolutely true.

So if you got scared when you noticed that I had disappeared from my angst ridden ledge – don’t fret. I just crawled back in the window while you weren’t looking.

It was a bit too breezy for my liking. I get cold easily, so I thought I’d better go get a sweater. And once inside, things didn’t seem quite so dire anymore.

There were sweet little babies who needed my attention and several pleasant hopes for the future that needed dusting. Someone was making dinner, and I realized that I was ravenous. I can always be distracted by snacks. And shiny objects. And if you haven’t noticed, I’m a little obsessed with my blog life.

Frankly, I’m just too busy to hang out on ledges with the pigeons. They aren’t the best conversationalists. And they eventually flew away when they tired of me hogging their spotlight. You know pigeons – it’s always all about them and their problems…

Right! AND (I just remembered) because:

6. Self pity is for the birds.

*Oliver is starting Kindergarten on Tuesday, September 7th, and I’m devoting this and next week to posts I wrote about him and his special needs. It helps me to re-read these and see how far we’ve come. It gives me even more hope for the future and reminds me of why I’m so proud of my son. Worry about the future will always take a back seat to that feeling. I wrote these two in May 2009.

I don’t know if I’ve mentioned this before – but my three year old son, Oliver is weird.

This is at least partly due to something called SPD (sensory processing disorder) that causes him to engage in activities that “feed” his need for a lot of sensory input. His teacher explained this to me by saying, “remember that kid in your class who just couldn’t stay in his chair? The one who would fidget so much that he’d actually fall out of it sometimes?” Well yes actually – I do.

I remember several kids like that. They were the ones who ate paste in kindergarten, fell into the pond on the second grade field trip and consistently got in trouble for “touching people” in more or less every grade through middle school. And now, as it turns out, I’ve given birth to one.

His exuberance makes me smile, then laugh, then cry from laughing so hard. And I think my heart might break when I worry about the people who won’t understand him or appreciate him. The people who will hurt him or bully him. Or make him feel any less than the very sweet little soul than he is. Because that will happen.

Instead of wasting my time on worries though, I prefer to plan for tomorrow, next week and next year. I work with his teacher on figuring out where this speech delay originates and strategize about how to correct it in the short and long term. We have more or less ruled out autism with a pediatric neurologist and are on to having his ultra-waxy ears cleaned out for a hearing test so that he can be assessed by a developmental pediatrician. As Miss Erin (or as Oliver calls her, “Miss Smerin”) likes to say, he is a bit of a puzzle. There seem to be several issues at play and all are fairly elusive…

But I really don’t spend too much time thinking about the problems and the boy that he was “supposed to be.” I’m far too busy enjoying the boy that he is. I recently spoke with a close childhood friend who has an autistic son and we agreed that not only is this better for them, it’s better for us. In describing her own son, she said, “every day, he makes us laugh. He’s just his own little person. While the other boys are in time outs for fighting over what to watch on TV, he’s busy figuring out the remote controls.”

This makes me happy just thinking about it – the fact that it’s okay like our kids for being different. Who got to decide that there is only one way to be anyway?

But the hard reality is that there is a standard for “normal.” That’s the reason that there is a special needs label. And it is our job to take our special needs children and try to teach them how to navigate a world that wasn’t set up with them in mind. It’s hard. And it’s scary. For all of us. But it’s not impossible.

I could so easily fall into despair over the “what ifs” associated with Oliver’s future – but what good does that do either of us? He deserves better than that. I’m the grownup and I set the tone for our house. If I am an emotional wreck over the things I can’t control, then everyone suffers for it. And at the end of the day, he’s not responsible for my feelings – but I am responsible for his.

So if he finds a ball of yarn entertaining, and wants to spend his quiet time unraveling it and then lashing all of the furniture together…fine. I’ll clean it up later (but only after he’s gone to bed since its disappearance could usher in “the end of the world”). If he wants to bring 12 straws to bed with him – or possibly all of the kid toothbrushes we own – who am I to judge? Perhaps this is soothing to him. Maybe he likes the way they feel in his hand – or just the fact that he can hold “all” of something in that one hand. He jargons reasons to me and I just say “fine.” I may do a little struggling first, but in the end, I let him decide. No one ever died from bringing straws to bed.

And every day I see progress – and his beautiful smile. And I know that it will be okay. Even though I understand that he’ll never be the easy going child that glides effortlessly through life. Or…maybe he eventually will. I’ll never know if I don’t do everything I can to help cultivate his self confidence. And his confidence in my own unwavering support.

My son is the greatest gift that I have ever been given. All of my children are. And I refuse to squander any of this fleeting time with them on anger or ingratitude.

I’m not a particularly religious person, but I consider each one of my children to be miraculous. And their current challenges and oddities just make them all the more unique and special. I need all of them as much as I need food and water. I need them to be safe and I need them to be happy. I need them to grow and laugh and love and know that there is nothing more important in this world to me than their existence. And if they have their own special needs – then I will meet them. I will be there from the time that they are unaware of these challenges to the time that their own personal demons emerge. I will always be there for them. Because in the end, I need them far more than they could ever need me.

*Oliver is starting Kindergarten on Tuesday, September 7th, and I’m devoting this and next week to posts I wrote about him and his special needs. It helps me to re-read these and see how far we’ve come. It gives me even more hope for the future and reminds me of why I’m so proud of my son. Worry about the future will always take a back seat to that feeling. I wrote this one in February 2009 and consider it the first of my “Special Needs” posts.