When our children are first starting to put sentences together and use multi-syllabic words, we are gifted with hours of amusement and endless family anecdotes. My three olds make up words and butcher syntax like any other kids their age, and of course we think it’s all hilarious.

Within the past hour, George asked me if a knife was “only for peoples” (his way of saying grownups), and after ranting at me about something, claimed that he didn’t scream, he just “yellowed.” Eleanor doesn’t just wear dresses – she wears “ballerinas.” And for a long time, she would announce in her best ring master voice, “ladies and Jaqueline!” Sorry Jaquelines of the world, but I think my daughter just called you a ho.

From George’s vehement, “YES I are!” retorts to Eleanor’s newest addition to the dictionary: “lasterday,” we revel in their audacity – their uninhibited assault on the English language. And we never tire of recounting these stories to both doting grandparents and graciously indulgent friends alike.

She is something else…

He is quite a character…

But I’ve realized that we don’t tell as many dialogue-related stories about my oldest son. And this isn’t surprising since his delays have made him much slower to experiment with language.

Where the twins, like other children, fling new words like confetti, five year old Oliver holds them close, tucks them into pockets and puzzles over them like foreign currency. The concept of language is understood, but the values attributed to the various elements still elude him.

Of course, he has made us laugh over the years with his own grammatical missteps and mispronunciations. In fact he charmed me just the other day by telling me that I “misappeared.” But these moments have been fewer, farther between and always overshadowed by the worry over what the future may hold.

I’ve been thinking about that more and more as I see the unbalanced ratio of blog posts dedicated to the funny things my children say. Oliver is not very well represented – and that makes me sad.

Because he is just as much of a delight to me as my twins. But who would know it?

I guess we just assume that others won’t appreciate these stories as much as we do. They don’t know how hard he works for what comes so easily to other kids. His funny stories would be more common to children two years younger and don’t seem quite as cute in the context of a boy his age. For those of us who know him well and love him just the way he is, there is no difference. We laugh and beam with pride and find him just as entertaining as his siblings. It’s like an inside joke that only we understand. So why bother?

But that’s not fair to him at all. Especially since there actually are other perspectives or contexts in which anyone can appreciate anecdotes about Oliver.

For a long time, I’ve likened his more unusual social anxieties and his tendency to disengage at times to that of a tourist who doesn’t speak the local language. Or at least not well – possibly due to dialect. He may understand a little of what is said, but the nuances might give him the slip. He doesn’t feel safe much of the time. He doesn’t know what people want of him and what their intentions are. New people could seem nice but really have nefarious plans for him (hello, good natured lab technician who performs pediatric blood tests!) So often, when he feels unsure of himself or the situation he’s encountered, he’ll wander off – withdraw into his imagination.

I’ve frequently remarked that it sounds like he’s speaking second language – like he’s a tourist or recent arrival here. His conversations are more stilted and formal. There are more pauses and confused expressions. And much like an Ellis Island alum, he communicates through rather imperfect English. It’s not baby talk and his diction is quite good, but he mixes up his prepositions and tenses like an immigrant mixes his metaphors.

Just today at the pool when the the lifeguard called “Break!” he looked at me and said, “time to get out Mom, the pool is breaking.”

I imagine Cousin Larry Appleton and I could share many a laugh over these little gems. It’s funny! It’s adorable. And it’s worth documenting and remembering.

He’s something else.

He’s quite a character.

Now don’t get me wrong. We are doing everything we can to help him improve his communication skills so he’ll eventually catch up with his peers and engage in more intuitive, spontaneous conversation. And he’s making some amazing progress with both existing and new therapies this summer. But we’re certainly not in a holding pattern, waiting for the results.

We enjoy every day with Oliver. We think he’s spectacular. We couldn’t imagine life without him. Exactly the way he is.

“The way he is” has changed quite a bit over the past year and continues to do so at a rate that even I – the eternal optimist when it comes to Oliver’s potential – wouldn’t have dreamed possible. And just like a parent does with a typically developing child, I’m simultaneously thrilled and grieved by his advances. Probably a bit less of the latter since these changes are triumphs that can’t be taken for granted. But what can I say? I’m a mother. I miss my babies as much as I admire the people they are becoming.

Because we really do focus so much on helping Oliver gain skills, this is a common topic of conversation with people close to our family. And in that conversation, people sometimes say rather thoughtless things.

I typically try to hear these things as they are intended and don’t take offense – but I have to admit to one exception. On several occasions, different people have made a reference to “fixing Oliver.” As in, “once we get him fixed…“

I KNOW that this isn’t supposed to be degrading to my son as a person, but I can’t help it…it upsets me. And I can’t just say “ah well – semantics!” and move on. Because I know that on some level these same people do consider him defective. Broken.

And I’m not faulting them for that because technically, they aren’t entirely wrong. But I don’t take the same broad perspective. I don’t see him as needing to be fixed – I see delays or disconnects that need to be addressed. He’s not broken, but he’s different. And it’s holding him back. And we can help him.

But I don’t think we help Oliver by seeing him as a thing that needs to be repaired. Because there is one area in which he is incredibly advanced. He is very aware of how he is perceived. He feels our disappointment, our dissatisfaction, our displeasure. He knows when he fails – even if he doesn’t know why. And the wounded look in his eyes tears my heart to pieces.

My son is not a vacuum cleaner or a DVD player. He’s not useless until repaired.

Even if he didn’t make one single advance in therapy this year, he’d be just as precious – just as loved. He is kind and intelligent. He’s funny and full of charisma. He challenges us and teaches us. And he makes me a far better person than I ever would have been without him. He’s helped to heal many of my own broken pieces. He’s mended cracks and made me feel whole. And I would never dare to presume that he is any less for his differences.

So I marvel over what a beautiful boy I have and enjoy big belly laughs over his quirks and crazy English. And I hope that even if he does get fixed in the end – and no one would ever know that he was once “broken” – he’ll still retain some of his otherness. Because it’s the nicks and cracks – the rough edges and battle scars – the unique imperfections – that show our depth of character.

*Oliver started Kindergarten on Tuesday, and I’ve devoted both this and last 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 just wrote this one in July 2010 – it’s the most recent. So that’s it for my two weeks of Oliver. If you had a special needs (or just very special – aren’t the all?!) child starting school in a mainstream classroom this year, let me know. I’d love to read about it.

As a parent of three small children in a townhouse community FULL of children, I’m only just starting to experience the anxiety of letting them play outside the safety of our front lawn. At one time, they would happily stay close to home and never considered crossing the street to interact with the older kids. But now that my oldest is five and my younger two are three, I suddenly find myself lapping our block and crossing into the next cul de sac to hunt down escapees.

They’re still a bit young to seriously join the roving gang of elementary schoolers on bikes and scooters. But when the games involve running through the woodsy common areas with plastic guns and gun-like sticks, the possibility for blending in with the crowd becomes more likely.

And as usual, my first concern is how my five year old with communication delays and all of the awkward social behaviors that accompany them will handle this. I worry that Oliver will opt to disengage and continue to play by himself in the dirt. I worry that he’ll try to play with the other kids but be rejected. I worry that he’ll manage to stay with the group but take their game too far and come across as aggressive.

There are so many things to worry about… So ultimately, I just don’t. I follow Oliver’s lead and try not to interfere. But when I see an opportunity to help him figure things out – I do make the effort.

So I recently bought some cheap dart guns from the grocery store. Then one quiet afternoon when the twins were napping and the other neighborhood kids were scarce, I set up a little shooting range for us. I showed Oliver how to cock, insert the dart, aim and pull the trigger. I, who have never expressed any interest in hunting, paintball, popular college “assassin” games or war movies, yet again had to push my own preferences aside to help my child be normal.

And what at thing to teach him! I mean – aren’t we supposed to discourage guns? Or at the very least, tolerate them within limits? I’ve never heard any experts suggesting that you teach your child to be the quickest draw on the block to help him fit in. But at the end of the day, I have little concern for my son’s future of wielding guns on clock towers or in convenience stores. I’m a bit more focused on him not getting pantsed in Kindergarten.

To be honest though, it doesn’t look like I have much to be worried about anyway. When I suggested that we turn our guns on each other (cringe), he didn’t much like that idea. My little pacifist! We compromised by shooting at our reflections in the windows. And a good time was had by all….sigh.

While I can’t say that I think he’ll be quite the gun fanatic that I see budding in his three year old brother, George…he does now have a clue about what to do if he encounters a pick up game of Armageddon with the guys.

I miss the days of watching Oliver toddle around. Of being oblivious to the future of special needs hurtling at us with a speed and force that would literally knock us flat. But you can’t look back. In fact, I’ve found that you can’t look that far into the future either.

It may sound short sighted to say that I’m not worried about the long term effects of encouraging what most parents consider “inappropriate toys,” all in the name of a short term goal to help him fit in. But just as I had no idea that my seemingly typical baby and then toddler would develop such complicated learning and social delays, how could I possibly predict the person he will eventually become? I personally think that he will be someone pretty wonderful. And a few unorthodox parenting strategies will not greatly impact the the bigger picture of his future as a law abiding citizen.

Like I said – he doesn’t seem to be all that gun crazy anyway. In general, he largely ignores the war games going on around him. But the other day while we were standing outside, he actually picked up a stick with the rudimentary shape of a gun and pointed it at one of our neighbors, a very enthusiastic war mongering six year old. He even made a little shooting noise.

I nearly burst with pride.

That same evening I witnessed something truly amazing. My Oliver, who has a hard time figuring out how to even be a follower with the neighborhood kids, actually took the lead.

Our next door neighbors have a cat named Tony. He’s a sweet black and white kitty who lounges around on various front steps and cars. He’s friendly and more importantly, extremely patient with the grasping and groping hands of the local tots.

Oliver loves this cat. He will lie down next to Tony on the sidewalk while petting him. He will follow him around when Tony tires of his advances and tries to leave. I’ve even found Oliver’s little feet sticking out from under our car where Tony had taken refuge (I can’t take my eye of those kids for a minute…) And there was no exception that evening when Tony came strolling around the corner. He was immediately attacked by my adoring son.

After a few minutes, Tony decided that it was time to extract himself from all of that suffocating love. And of course, when the poor cat darted away, Oliver followed. As luck would have it, this grabbed the attention of our six year old neighbor friend and another little boy who was standing nearby. They ran up to see what Oliver was doing.

Oliver just said, “want to go get Tony?” and out of nowhere, a wild chase ensued. Now joined by my twins, the three boys ran like crazy after poor Tony all around our side of the block. They chased him under back porches and crowed with delight when they saw him streak by in another attempt at escape. I would have been happy to just see Oliver joining in the game, but this time he was actually calling the shots, “this way!…there he is….get him!“

I have never been so thrilled to see children torturing an animal.

Okay – “torturing” is a rather gross exaggeration… But I think it’s safe to say that Tony would have preferred to spend that thirty minutes sunning himself in the last few rays of daylight.

Of course, none of the children actually hurt, let alone touched Tony. And he’s still fond of us, willing to let Oliver pet him for limited periods of time. But that evening, he was more than just the neighbors’ friendly cat. He was the catalyst for what would be the first time Oliver played with a group of children for that long without losing interest and wandering off. I almost cried to hear him say “follow me!” and then to actually see the other kids do just that.

So yeah – yet another example of allowing behavior that should probably be discouraged. I admit it – I make some iffy calls…but I generally stand behind my choices.

I don’t look too far ahead. It’s simply too much for me to take in. Too many unknowns. Too much worry…too much hope… Instead I try to aim for the more attainable goals in the here and now.

I don’t know much about shooting, but my guess is that you have to keep your range realistic. Anything can happen – sometimes the easiest target might give you the slip. But it goes without saying that you should take your chances when you’ve got a clear shot. One that’s close enough to touch. Even if it seems a bit risky. Life is always risky, so why not take our chances when the odds are in our favor. You take a risk every time you walk out your front door. Just ask Tony.

*Oliver started Kindergarten yesterday, and I’ve devoted both this and last 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 June 2010.

Oliver is turning five at the end of March, and I kind of can’t believe it. Maybe it’s because he was my first baby, but I still think of him as a little guy. Well – little in spirit, since he’s roughly the size of a very short middle school child…

And truly, he’s so far from toddlerdom, I can’t even pretend anymore. He doesn’t need me nearly as much as he used to. He can get himself a snack – typically not the kind I would have selected for him…but still. He can turn on lights (yeah – electric bill!) and the television. He can even dress himself although his apathy for wearing clothes makes for some rather incomplete outfits – usually missing pants.

And he never ceases to amaze me with his talent for putting on any shirt inside out and backwards.
Anyway – I can’t help but think about how the apron strings still firmly knotted through his belt loops just keep getting longer and longer. Now, when we play outside, he’ll often disappear from my line of sight. Something that would once have been the source of a panicked sprint in the direction I last saw him and possibly some pre-hysterical yelling of his name. Now I lean toward a much calmer mosey and unconcerned yoo-hooing for his return to the fold. Of course, that’s typically followed by some bellowing about notdoingthatnottouchingthatnoteatingthat… But that’s another issue altogether.

When he was a newborn, we lived in a third floor condo apartment. The trash chute was only four doors down from ours, but for the life of me, I could not bring myself to leave my tiny baby alone for five seconds to take out the garbage. I was convinced that I would one day lock myself out while my son lay trapped in the apartment, wailing from fear and hunger.

So I did what any other concerned mother would do – I took him with me. And holding Oliver in one arm while I used my other hand to carry that one trash bag was pretty easy. Even opening the door to the trash room was simple enough. The complications began when I had to open the chute.
It opened in much the same way that a mailbox does, but there was a latch that needed to be held down in order to pull the handle. Most definitely a two hand job. While I could open the chute with one hand, I still needed to hold it open so I could lift the bag into it. And this presented an entirely new venue for my mania.

Since my other hand was already in use for baby detail, I had to look to other body parts for assistance. Unfortunately, the chute was located too high on the wall for me to secure it with my foot or my hip. So left with waist up options, the only feasible candidate was my elbow.

The process was that I would first open the chute with my right hand. Then, holding that down, I’d press Oliver to my chest with my left arm and rest that elbow on the open door. Then, as I cut off his oxygen supply, I would say approximately five Hail Marys while I let go with my right hand and used it to pick up the trash bag, even thought I’m technically not Catholic and hadn’t been to Mass in years. Then I dropped it in the chute, and the minute it left my grasp I would wrap both arms tightly around Oliver and say prayers of thanks to God for not letting me drop my baby with the trash.

Every day.

You would think I’d pull out the stroller for this – but what can I say? A mother’s love and paranoia go far beyond reason.

As the year went on, I took the CA-RAY-ZEE down a notch and relaxed a bit. I could watch my toddler run around on the grass and not worry about every stumble and scraped knee. While I hated the idea of him being hurt in any way, I knew that the falls were inevitable and all part of learning to stand, walk, run…grow. Like all other mothers, I knew that I had to let go a little. And the apron strings lengthened.

Having the twins when Oliver was still a baby himself probably helped. I simply didn’t have the luxury of time for unnecessary worry. I embraced the old adage that children bounce and just held my breath (and said a few Hail Marys) when I saw him doing something perfectly normal that still made me nervous.

But I’d be lying if I claimed to take everything in stride. There was always a resonance deep below my love and pride for my children that screamed, “DON’T…STOP…DANGER!” And sometimes it was pretty hard to ignore. I could turn myself inside out from the fear that anything could happen. That every step they took away from me could lead them into forces beyond my control. What if Oliver tripped on the stairs and broke his neck? What if a rabid squirrel attacked him? What if a big crack opened up in the ground? The possibilities were endless.

Fortunately, I am not a complete psychopath and never take this beyond ordinary watchful wariness. But the irony of the situation is that my big beautiful boy who has never been seriously ill or hurt in his life continues be a constant source of worry for me.

No – not just worry…fear. Bone chilling, stomach churning fear of the far more possible what ifs. What if he still can’t hold real conversations by the time he starts Kindergarten in the Fall? What if he’s so awkward that the other kids are cruel to him? What if he starts to realize that he’s different…an outsider…?

I put up this strong front of not caring what anyone else thinks, and I actually don’t – for myself. But I do care for him. I care so much – too much, and it tears me up inside to imagine him feeling any less than a bright, sensitive boy so full of potential.

But those apron strings aren’t retractable. I can’t stop him from falling. All I can do is be at the ready with bandaids and open arms. They’ll always be there as long as he’ll have them. Which won’t be forever…but again, that’s another issue altogether…

Please don’t comment with the “you’re such a good mom” pats on the back, because the truth is – I’m not. Or at least, I could be so much better when it comes to this oldest child of my heart. I hate research…I’m terrible at schedules and structure…I have of yet to discover effective punishment for bad behavior… This doesn’t come naturally to me – this mothering of a special needs child. I’m good at the love, patience and acceptance part – but not so good at the “work” involved.

But I’m trying. I sit with Oliver and help him practice his pencil grip. I encourage him to work on the things that would be easy for him if he just tried. I wheedle him into trying the things that don’t come so easily with baby steps and little pressure. And I watch as he dresses, no matter how long it takes, reminding him to stay focused. I show him how to make sure his shirt isn’t inside out and correct him when he starts to put in on backwards.

And he’s learning. His shirt is now rarely inside out and backwards.

For a few years now, my heart has felt inside out and backwards. But I’m learning too. And with a little time, I think I’ll get it right.

*Oliver is starting Kindergarten TODAY, and I’ve devoted both this and last 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 March 2010.

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.