Tag Archives: Special Needs Posts

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…

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.

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.

I Didn’t Know

I have three children and my oldest, Oliver is six. He is a big boy—tall and strong—and all boy. He climbs trees and hurtles into swimming pools. He loves nothing better than a good patch of dirt. We jokingly call him Pig Pen since he will often return from such a spot, haloed in dust, his clothes emitting puffs of dirt with each step. Ice cream cones are a full body experience. Napkins are a joke. This degree of messiness requires a washcloth at minimum. His requests to “come look at this,” often involve a worm.

These are some of the qualities and quirks that come to mind when I think of Oliver. They are so defining. And they are almost all related to sensory integration disorder. Which includes auditory processing disorder…which translates into significant language and communication delays. It also affects his motor planning. My amazing son who can walk a balance beam like a gymnast, who taught himself to swim, who can carry a full basket of folded laundry up the stairs…can’t hit a tennis ball. He can’t follow simple directions to touch his left hand to his right ear and his right hand to his left ear. He can’t process that kind of information—hear it, understand it, do it. It gets scrambled. For all of his strength, coordination and love of physical activities, he can’t play sports. Or even tag.

This can change—but it will take time. And hard work. And money. And a label recognized by the public school system.

It’s both encouraging and daunting.

Having a special needs child is not something I ever thought about when I was pregnant with Oliver. Everyone knows that it’s possible, but I think we tend to see that possibility the same way we do car accidents and winning lottery tickets. We know it could happen, but we don’t expect it to happen to us.

And many of us don’t even know that it’s happened to us until our children are long past the early months of worry. The more serious worries over SIDS and their “ability to thrive,” and the less serious (but all consuming) concern about sleep schedules. Oliver was two when we discovered his delays.

He was absolutely perfect when he was born. Arriving one week late and HUGE, he was 9 pounds and the most beautiful baby I had ever seen (of course!). I’ll admit that my first impression was more along the lines of “red and squashy” but after a few hours, his looks made a dramatic improvement.

He was a stinky sleeper, but I got used to that. We had two years of healthy well checks at the pediatrician. He rolled over and smiled when he was supposed to. He was walking shortly after his first birthday and loved to be with people. He would walk into any party and make himself at home. He was the baby that you could hand off to anyone—no separation anxiety or shyness. In our innocence/ignorance, we actually said that it looked like we didn’t have to worry about autism.

How could I have known that in a couple of years, he would be diagnosed with PDD/NOS—the catch-all category of the autism spectrum. My friend Sarah defines this as “we don’t really know what is wrong with your child – but there is something wrong with him…”

I didn’t know that I would have an autistic son—or a son with sensory integration disorder or auditory processing disorder…. The labels don’t matter. They all equate to the same things: fear, worry, money, meetings, appointments, guilt, and heart-wrenching hope. I didn’t know that this would be the rhythm of my day—the back beat of my heartbeat.

But I also didn’t know that I would have a son who reads my emotions better than any other person in the world. He will come to me when I’m feeling low but looking as if I haven’t a care in the world, “Mommy, are you crying? Not crying?” He understands and can see “crying on the inside.” Most emotionally evolved grownups don’t see that.

I didn’t know that I would have a son who would teach me to be a much better person. To be more patient, tolerant and compassionate. He’s taught me not to judge until I have the full story. And to not even judge after that. I’ve learned that there is never just one right answer. And that sometimes there isn’t any answer at all. That we all do our best and sometimes that has to be good enough.

I didn’t know that I could admire one of my own children so much. And try to emulate him. Oliver’s first teacher once said to me, “life is very hard for Oliver.” And it was meant to be taken at face value—life really is hard for him. Things that come easily to others—asking for something, joining a game, understanding directions—are difficult for him.

Oliver navigates the world with an upside down map. He never speaks the local dialect. And in effect, he’s learned to work hard, be his own man and give others space to have their own differences. I think we could all try to be a little bit more like Oliver.

I would be lying if I said I never experienced moments of frustration or self-pity. Don’t we all? At the end of the day though, I consider myself to be very lucky to have three beautiful, happy, healthy children. They are all full of potential—yes, even Oliver. And as much as I hope, wish and pray for them, I don’t know what their futures hold. Motherhood doesn’t come with a crystal ball. We don’t even get a compass.

But there is something to be said for this lack of certainty. Not knowing allows us to dream. And that is what keeps us going when times are tough. For every bad day, there is the possibility of a miracle on the horizon…or at least some good days. And the best we can do is learn more about ourselves and each other in between them.

I once said that I didn’t think I could be a good mother to a special needs child. That it would be too hard for me.

I didn’t know.
That I was wrong.
Originally posted on Health News, HERE.

Broken English (Alternatively Titled: Fixing Oliver)*


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.

The Shooting Range*


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.

Inside Out and Backwards*

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.

The Island of Misfit Toys*

(click image if you have never heard of the “the island of misfit toys”)

On Friday, I went to the open house for my son, Oliver’s preschool. He’ll be in the afternoon class with the older kids, but the morning class for the younger ones was there as well, making it twice as chaotic and confused.

Everyone had questions about bus schedules, school forms and cafeteria lunches. Everyone tried to keep one eye on their children while maintaining appropriate eye contact with the teachers providing answers. Everyone forgot half the questions they wanted to ask as well as each other’s names seconds after every awkward handshake.

And since I had to bring my two year old twins along for the ride, I was probably the worst of the overwhelmed, overstimulated bunch. But there was one conversation that didn’t end with the tug of a small hand or the sudden realization that a child was no longer visible.

I met one woman who tugged at my heart with her obvious loneliness and her own perceived invisibility. Her need for connection and understanding was palpable. And I recognized all of this in her pleasant smile and bright small talk because I have felt all of the same things myself.

I too have a special needs child.

All parents of children with special needs have felt alone and confused. And we all need to find others. People just like us, who know what it’s like to watch other children effortlessly join playground games and amaze grownups with their precocious conversation. We’ve all been on the other side of that social fence, blending in like chameleons. Hoping that no one notices our own child’s challenges and questions them. Or worse – makes uninformed excuses for them.

I listened to this woman’s story about how friends she’s had since childhood now avoid her. They have typical children and no tolerance for her son’s “bad” behavior. They either don’t want to put up with it, or possibly they just feel uncomfortable around her. But the outcome is the same. She is alone. She doesn’t fit in with them anymore.

I gave her my phone number and told her to call me any time. Maybe we could have a play date since her son and my twins are very close in age. My twins are what I’ve learned to call “typical,” but I have no fear of exposing them to a child who isn’t. They live with one already. And I know how much that little boy, like his mother will need friends who understand.

Oliver is four years old and has been in Fairfax County’s special preschool program since he was two. Looking back, I realize how incredibly lucky we were to find out about his delays so early on.

He was our first baby, so we had no means of comparison. Sure, we have plenty of friends with children the same age, but when they’re so little, those differences can easily be explained away. You can say that all babies develop at different rates (true) and that their very unique personalities would encourage different areas of strength (also true). But without that personal experience of watching another child grow and learn, you just don’t have that instinct that tells you “something isn’t right this time.”

Some mothers claim that even without older children, they just knew. But I looked at my big (and I mean HUGE), healthy 18 month old and thought he was fine. In fact, I thought he was better than just fine. I thought he was beautiful, wonderful…miraculous. And he was…he is. But he does have significant speech and social delays.

He did then too. But he was so young. And so much could be explained away. AND he had just become a big brother to newborn twins.

What child wouldn’t withdraw, act out and even regress a little? So what if he didn’t quite fit in with the others? His whole world had been turned upside down. Of course it affected him. It all seemed pretty normal to me. But months later I had to admit that he just wasn’t catching up. He wasn’t like my friends’ “normal” toddlers.

With some prompting from concerned relatives, we took him to a private child psychologist who established that he was in fact very delayed and would benefit from early intervention as soon as possible.

Then we got smart and started talking to people. We discovered that there were county funded programs for special needs children (although we weren’t actually using that term yet…not yet…) And we contacted Child Find.

We learned that we never needed to pay for that first round of testing since our tax dollars afforded us free services. But of course this is the lot of special needs parents – to continually learn what we didn’t have to do, what we should have done, what we could have given our child, but just didn’t know…

But we quickly learn to move on from that and not beat ourselves up. Or at least we try.

It’s hard to accept this inability to identify your child’s need. Your baby cries and you feed him, change him or hold him. He gets sick and you take him to the doctor. He grows and you buy him new clothes. Your job is to meet these needs. Any and all needs. It is your new reason for being. The most important job you’ll ever have.

And then, one day you find that you failed.

But these new needs allow no room for self flagellation. There is too much to learn and do. And to waste time on guilt seems pretty selfish.

So does the new source of anxiety for a special needs parent: the fact that you no longer fit in either.

Special needs don’t start and end with the child. They are part of the family as a whole. You become a group of misfits. A band of intrepid explorers, thrust into uncharted territory without a map or a compass. All families are different, as are the journeys they take together – so no one gets a guide. Survival hinges on everyone doing their part. Loyalty to the team is imperative. There are no solo missions.

Unfortunately, the leaders rarely volunteer for the post. It’s the lottery ticket that no one really wanted or expected. And not one of us could claim to be instantly skillful team captains. Basically – it all really sucks, and our initial reaction is to avoid ever leaving the ship.

Suddenly the voice mail from a friend wanting to set up a play date doesn’t make you smile and run to check your calendar. It makes you begin the endless cycle of “what if” worrying: “What if he doesn’t want to be there and cries? What if he plays rough and hurts the other child? What if he refuses to listen to me and I have to go through the motions of yet another ineffectual time out, just to look like I’m TRYING to be a good parent?” And the deepest, darkest of worries – the one we so rarely speak aloud: “What if he embarrasses me?”

It’s so tempting to go for the isolation option. To stick with your own kind.

But all of that changes when you meet other special needs families. It’s so comforting to be with the other misfits. They get it. They don’t look uncomfortable when your son is rolling around on the ground. Or kicking up dust clouds without any regard for the people next to him. Or pushing other children to get their attention. They don’t assume that his age or size would make him more mature. They don’t assume anything. They just smile and nod. There’s no need for words. They just know. We all know.

And that is what special preschool has become for me. A safe haven. An oasis in a desolate landscape. A private island where no one gets voted off. Acceptance is mandatory. In fact, it’s second nature.

The children get the special services they so desperately need, but they also become part of a community. They meet children with the same challenges, with worse delays, with higher functionality and with very limited scope for improvement. They are all misfits. All broken to one degree or another. But all deserving of love and appreciation.

They are safe on their island, and they are loved. Their needs are recognized and prioritized, and their triumphs – no matter how small – are celebrated.

The parents spend no more time in the special preschool classroom than do parents of children in private preschools. But our hearts are there every second of the day. And not just in the expected way that parents claim to leave a piece of themselves behind at drop off. For those of us with special needs kids, those classrooms aren’t just a place for learning – they are a place for hope.

And oh – but isn’t that the most beautiful, terrible, spirit lifting, soul crushing, incandescent word that a parent can say, feel, pray….”hope.”

Because that’s what it boils down to in the end. We sit on that island with our polka dots and square wheels and inability to fly and our…what exactly was wrong with that doll again? I never did understand that one… But we all sit there together. And we hope.

Together.

Which is the opposite of alone.

But it doesn’t end there. It can’t. Because hope isn’t enough. You can’t live on an island.

It’s nice to have a port in a storm, but we all live in the real world where (to really beat a metaphor to death) it isn’t always smooth sailing. People are unkind. They are busy and cranky, and they would rather gossip than research. The real world isn’t perfect and neither are the people in it.

Which brings up an interesting point: no one is perfect.

No child is perfect. No parent is perfect. No family is perfect.

We’re all flawed. We’ve all felt like outsiders at one time time or another. We’ve all felt lonely – even invisible. So in a way, we’re all misfits. Atypical.

And what defines typical anyway? I think it’s simply a majority rule. But a majority based on sweeping generalizations.

Which is fair. Because who has time for case by case living?

But I would ask one thing of the more typical misfits out there. Please try to make time for compassion.

Don’t assume that a child is “bad” based on their behavior. Don’t assume that their parents aren’t trying. Don’t assume anything.

You never know when you might be on that side of that fence. And when you are, you’ll appreciate a little empathy. Not sympathy – never sympathy – but an acknowledgement that things are usually more complicated than they appear. Something that everyone knows from personal experience.

Your polka dots may not match my square wheels. In fact, you probably look like that totally normal doll (I think she may have had a psychological problem?) But we’re all misfits in our own way. And you should make a little time to recognize this.

Because it takes one to know one.

*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 September 2009.

I Never Thought I’d Wear Sunglasses (Alternately Titled: Shooting Practice Starts Tomorrow)*

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.

I Cried Yesterday*

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.