I’m Sorry, It’s The Asperger’s

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“I’m sorry. It’s the Asperger’s.”

That was the “heartfelt” apology that my almost seven year old daughter came up with, after a raging meltdown in her classroom the day before, during which she verbally unfriended her best friend in the class.

Of course, trying to play the part of the responsible mom of a daughter with asperger’s, I tried to steer her away from these words, claiming that they sound like an excuse. And, well… NOT very sorry.

I encouraged her to dig deep and find her empathy. Empathy that, although not always present at the appropriate times, I know she is capable of.

“Maybe tell her that you’re sorry, and that you didn’t mean what you said, and that she really IS your friend, and that you’ll never yell at her again…”

“It’s not an excuse,” she replied, bluntly. “It’s the truth. And it’s what I’m going to say.”

Because I persisted in trying to alter her idea of an apology, she left for school on the bus, still anxious, and perseverating on how she needed ME to WRITE an apology for her, because she hates writing and writing makes her hand too tired and cramped, and it needed to be done NOW and it was just all too overwhelming for her.

She declared that she wouldn’t talk to her friend that day. She wouldn’t be able to look at her. She was scared of her.

As I reflected on my feelings of failure as a mom that morning, that I couldn’t make her see things differently, I realized that I was trying too hard. In my efforts to teach her “Theory of Mind,” the concept that other people can think and feel differently than her, I de-valued her own struggles.

This happens a lot. Being as high functioning as she is, people will likely always see her as having more control over herself than she actually has. They won’t factor in sensory overload, or difficulty understanding social situations, or fine and gross motor skill struggles that aren’t bad enough to qualify her for occupational therapy. They will be appalled that such a seemingly intelligent child can throw a regressive tantrum that could rival any toddler.

I sometimes see it in their stares. Hear it in their voices: A spoiled brat. Needs discipline. Parents must not set limits.

She sometimes resembles a modern day Veruca Salt, as she demands a new stuffed animal because having one more cat stuffed animal is the solution to her feelings of overwhelm as she is innunndated with sensory stimulation and social information that is impossible to process in that moment. The object of obsession is tangible, straightforward. It makes sense. She needs a solution, and her frazzled young brain seeks to find a simple one.

No, it doesn’t make sense to us. But to her, in those moments, nothing makes sense. She needs something to make sense.

After her massive school tantrum had subsided on the day she was mean to her friend, she called me from the principal’s office. “I’m having a hard day,” she said. “She told me she couldn’t come to my birthday party, and I said she wasn’t my friend anymore, but I was just being sarcastic.”

“Sweetie, that’s not sarcasm,” I replied defeatedly. Sarcasm has been a point of contention before, as it confuses her. In an effort to relay that she was saying something she didn’t mean, she described it as sarcasm. I made a mental note to find a way to better explain the concept of sarcasm to her, and told her that she should apologize to her friend.

I was so quick to correct her faults. The fact that it’s unacceptable to throw tantrums in school, and yell at your friends. The misuse of the word, “sarcasm.”

In all actuality, I knew that she was disappointed and confused in that moment that her friend politely declined her party invite because her family already had plans. She misinterpreted the situation, and was so overcome with emotion that there was no sorting through to logic. Her feelings were too big, too confusing. She exploded. I felt sorry for the innocent victim who was likely just trying to let her know about the party she wouldn’t be attending. I felt even more sorry for my daughter, who couldn’t interpret this rather cut-and-dry social scenario through her own sensitivity.

So while I’m sorry for the hurt feeling my child caused another little girl, and for the hard time she gives to the adults in her life, and those at the school, and as much as I want her to take responsibility for her actions, not use her deficits as an excuse, and only exhibit her strengths, she’s kind of right when she says, “It’s the Asperger’s.” And she’s young. And she has high-functioning autism that is not obvious to the average on-looker.

Yes, she’s pretty, smart, and charming most of the time. And yes, she will throw completely socially inappropriate tantrums at times, and not fit properly into the box that she’s supposed to fit into. She’ll possibly be wearing a ridiculously sparkly dress while she’s doing it.

It may not look right to them. But, I’m sorry. It’s the Asperger’s.

By the way, her teacher informed me that she did, in fact, apologize to her friend at school that day. She dug deep. She tried. I’m not sure how she phrased her apology, but it doesn’t matter. I’m certain that she didn’t say it the way I would. She found her own way, and I’m immensely proud of her for that.

Related post: What You Don’t Know About that Wild, Unruly Child

Dear Newly Inducted Special Needs Parent

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I see you.

And I don’t mean I physically see you (though I do). I mean I see inside you — I see the storm that’s tearing your soul apart, bit by unimaginable bit.

I can see you because I am you. Not now you, of course, but rather future you. And I’m here to say, I understand.

Whether you’re sitting in a hospital NICU or your car after a visit to a specialist’s office, your mother’s living room or your cubicle at work, I know your pain: a primal cocktail of fear and sadness and desperation and anger.

A feeling like none other you’ve experienced to date.

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“They” have told you the second worst thing you could hear as a parent: Your child has special needs. Your child will never walk, talk, hear, see, process, understand, feel, be able to [insert physical/cognitive/functional ability here]. Your child is “not normal”.

And whether your child has suffered a sudden brain injury or suffers from a congenital disease doesn’t matter. The end result is the same: This child’s future is not the one you had imagined. This child is not the one you had imagined.

This child will not have the adolescence about which you have spent hours and days and months and maybe even years fantasizing. This child will need far more than you have anticipated. This child will become at once a trial and a blessing.

You feel guilty for having these emotions, I know. What kind of parent perceives her child as a trial? You should, after all, be glad s/he is here at all. And OHMYGOD you are. You are so indescribably thankful. You are so filled with love for this child, you could burst at any moment. But you are also worried. Very, very worried.

You feel guilty for questioning how you might possibly give this child the care s/he needs. You feel guilty for wondering how you will provide your other children with the attention they require. You feel guilty for fretting about how you will pay for all the medical expenses. You feel guilty for contemplating what all this will mean for your family routine and dynamics.

Some judgy types will jump to curse you for thinking of your child as a burden because that’s all they see in your raw emotion. They will ignore the undying love you have for your child. They will ignore how incredibly grateful you are to have your child. They will ignore your desire to do whatever it takes to ensure your child is safe and happy and healthy. Instead, they will preach about how they would never ever ponder these questions, or worse, if they’re special needs parents as well, how they have never had these same feelings.

Forget them. They’re liars. And perhaps convincing themselves that they would never is just their way of coping.

You will mourn for your child in the same way one might mourn a death. And you are mourning a death, if you think about it. The death of the hopes and dreams you had for your child. The death of the plan you had imagined for your family.

So go ahead and mourn that death. There is nothing unnatural or heartless or improper about it. It is part of the grieving process. It is necessary.

You will be bombarded with “God only gives special children to special people” and “This is God’s plan” from well-meaning people who think they’re doing you a service or simply don’t know what to say.

Grit your teeth and bear it. None of it’s true, so don’t worry. God hasn’t specially selected your child to suffer a lifetime of physical and emotional pain. He hasn’t chosen you out of many to live in agony on purpose. God isn’t that cruel.

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You will see parents with “typical” children in the grocery store and at the park. You will see pregnant women smoking or drinking caffeinated beverages. You will see parents abusing their children, both verbally and physically. And you will hate each and every one of these people with all the darkness and malice your soul can muster, for how do they, with their carelessness and ungratefulness, get to escape your child’s and your living hell?

You are perfectly justified in having these feelings. But remember, it isn’t their fault. And while we’re talking about fault, it isn’t yours, either. So indulge in these emotions privately. Most importantly, don’t let them eat you up inside. They are perfectly natural but also potentially dangerous. Entertain them with caution.

Your child will grow and flourish and defy expectation. The cloud of depression and anxiety and despair in which you live will thin. You will feel better. Much better. Many of your initial fears will be allayed as your child comes into him/herself and his/her body. Some of those fears will remain, but they will not burn as hot in your heart.

Some may mistake your poise and grace and got-shit-togetherness as a sign that you’re “over it.” They may expect you to be just as social and able and willing and available as everyone else. After all, parenthood is hard for everyone, so what’s the big deal? What makes your life so much harder than theirs?

Just remember that they don’t know — can’t know — what it’s like to live your life. They don’t know just how many therapists and doctors your child must see, each with his or her own separate set of “homework” assignments to tackle. They don’t know that every play date is just another therapy session in disguise. They don’t know how much time and energy it takes to get one’s shit together every day. Their jobs are hard. But yours — yours is hard in a different sort of way.

The fact that your job is hard does NOT, however, make you a saint or a superwoman or a better parent. It simply makes you capable of doing what needs to be done, just like everybody else. What needs to be done for you and yours may take more time and energy. That’s the only difference between you and them.

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Eventually, while you may still ponder the what-ifs on occasion, you will mostly be unable to imagine life any other way. You will be comfortable in your routine. You will be well.

So let me remind you, newly inducted special needs parent, that I see you. I see inside you at the storm that’s tearing your soul apart, bit by unimaginable bit. And I promise you, it will get better. It will be OK. You will be OK. Most importantly, your child will be OK.

And I know this because I am you. Not now you, of course, but future you.

Related post: I See You Over There

I See You Over There

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I see you there, shaking your head in silent judgment as my son argues with me in public.

I see you there, making a face and rolling your eyes when my son doesn’t behave the way society expects him to behave in public places.

I see you there, telling your son not to play with, or talk to, my son because you think he’s a bad kid, a disrespectful kid, a problem kid.

My son doesn’t notice you. He’s too busy to be concerned by what other people think of him, but I notice you. I see the judgment on your face.

Do you think that I can’t see you? Do you think that somehow I love my child less than you love yours because God made him special? Do you think that somehow you and your child are better than me and my child because you don’t have the same issues that we do?

Do you know how hard it is for me to remain silent when I see you judging my child? Do you know how badly I want to call you out in front of everyone here and say “I see you! I see you judging us!”, but unlike my son, I am hesitant to make a scene. More importantly, he hasn’t noticed you yet and I’d prefer he never does. I’d prefer he never realize that some people judge him and find him lacking in some way. He is perfectly happy with who he is, he’s perfectly content in his own skin, he doesn’t think he has any issues at all. I’d prefer to keep it that way for as long as possible.

Every person on this planet has some kind of issue. Perfection is an illusion. It just may be that your flaw is judging other people.

There are a lot of things about my child that you don’t see. You don’t know that he loves me with his whole heart, without reservation and without hesitation. You don’t see that he is fiercely protective of the people he loves and he would be deeply upset to know that you had upset me with your actions. You don’t see that he is an amazing student, and gets fantastic grades at school.  You don’t see that sometimes he frustrates me beyond belief, but he is my child and I love him just as fiercely as he loves me.  You don’t see that he is funny. That his unique perspective, and view of life, combined with the fact that he has no hesitation to point out anything he notices often makes me laugh until I have tears rolling down my face.  You don’t see that he feels things deeper than most people, that includes both joy and hurt.

No, you don’t see any of that because you don’t care. All you care about is that he is talking a little too loudly for your taste. That he is distracted by a piece of fuzz on his shirt when he should be listening. That he is emotional at times, and gets upset easily.

Because of these things you’ve decided he’s a bad kid, that he’s unintelligent, and that he’s not worthy of your time or attention.

Guess what? You are not worthy of mine, either.

He is honest, he is authentic, and he doesn’t judge other people. He has empathy, he has compassion, and he cares about others. He is always working to be the best that he can be, and he doesn’t waste his time looking down at other people. He’s enjoying his life and he is enjoying everything that crosses his path.

Don’t you wish you could say the same?

Related post: Looking for a Land of Empathy and Wonder 

I Thought We Had More Time

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I sad because my legs no work so good.  I no run fast like Parker. My legs no work.

It’s the heavy silence that follows the bomb dropping, where all you can hear is the sound of your own heartbeat pounding out its instantly accelerated rhythm in your ears, followed by the air slowly leaving your body – the breath you’ve been holding since he said it.

Someone should say something.  Someone should tell him it’s okay, that he’s perfect, that we knew things would be tough and that they likely always will be but that we will get by. Together.

Isn’t someone going to say something?  Because I am doing all that I can just to hold back from letting out this sob that is building up in the back of my throat in the seconds since those words came out of his beautiful rosebud mouth just dripping with sadness.

But it is only me in the car with him.  And Parker.  And I am supposed to be the one to soothe him, to tell him…what on Earth am I supposed to tell him?  That it will be fine? That it sucks? That I’m sorry?

I thought we had more time.

I thought that we would’t be here yet, that at four years old, this boy – my beautiful boy that finally definitively learned last week that he is a boy, that can remember that my name is “Jamie” but still can’t consistently recall his father’s name, that thinks that the thing he poops out of is called his “tushie” and the thing he pees out of is also called his “tushie” – well, I thought we had more time.

I thought he had more time.

More time to walk through this world oblivious to having Cerebral Palsy, more time before he was aware of the cruelty that the cocktail of fate or genetics or bad luck or me not taking my prenatal vitamins regularly enough served up to him.

That was another of our “silver linings” – of the platitudes we told ourselves about his cognitive deficits, about how, At least he doesn’t realize it.  At least he’s not aware of all of this – that he’s different – that most kids don’t have to work so hard just to get through each day and that it is not normal to have eight hours of therapy every week.  At least he doesn’t realize that he’s different, we told ourselves and each other. Thank God for that.

But he knows now.  Something that revealed itself on our drive to school this morning when Parker told me that Owen doesn’t look so good.  I peered at him through the rearview mirror half-expecting him to be some horrendous shade of green, but his coloring was fine.  I assumed it was likely because he was still upset that Scott told him he couldn’t wear his Oscar the Grouch watch to school today.  Seeing this as an opportunity for good communication between them and a chance to have Owen talk about his feelings, I suggested to Parker that she ask him what was wrong.

Owey, What’s wrong? She asked sweetly.

I sad. He replied.

Why are you sad? She pursued.

I sad because my legs no work so good. I no run fast like Parker. My legs no work.  He responded.

I think I gasped. Quietly, but it happened.

And then Parker saved me.  This five year old who knows – my God does she know more than she ever should have to, than any of us should – she saved me. She just jumped right in and she gave him the best pep talk I’ve ever heard.

“No Owey, you’re going to be really fast one day.  You can grow into my sneakers soon and I’ll give them to you – even though they’re pink – because they light up and that makes people really fast.  And you should ask Daddy to help you with your running skills.  Daddy’s really good at stuff like that.  I bet you’ll even beat me one day!”  She told him.

Telling her little brother that one day he would beat her in a race was the very height of generosity for my girl.  For this little thing that has problems of her own – arthritis and sensory issues plaguing both her strength and her self confidence – her speed is the one physical trait she treasures and takes pride in.

And she gave it to him.  With absolutely no hesitation, no reservations.  She gave him that.

I thought she had more time.

Before she needed to start giving him pep talks and worrying about standing up for him and explaining things to him and for him.  She’s only five.  She’s not even in Kindergarten and somehow she just knew that he needed this.

And then we pulled up to his school, and I dropped him off, letting his therapist know that he was feeling a little sad today.  He kissed me goodbye and looked at me with those clear blue-green eyes of his, the ones that always make people comment simply Those eyes!, and they were cast down a bit – no smile crinkles at the corners, no usual sparkle.  Something in him had made the connection and he was feeling it.

It’s when you know that thing that you can’t un-know.

It’s when you see that look in your child’s eyes that you can’t un-see, or you hear that profound sadness in his voice that you can’t un-hear.

It’s unbearable.  I ache for him – for his little heart that knows now.

And I dropped Parker off a few minutes later at her school, having turned to her at the first red light to tell her how incredibly proud I was of her.  How she showed such generosity, and grace, and love towards her brother in those moments.

And then I called Scott as I pulled out of the driveway of her school, and told him what had just happened and finally set free all of those tears that had been impatiently waiting to be shed.  And I wondered aloud what we were going to do, what we were going to tell our boy, how we were going to explain all of this to him.

I have cried on and off all morning – thinking about that conversation this morning and the conversations that are inevitably going to follow it.

And I still have absolutely no idea what to tell him.  There are things that a hug and a kiss can’t fix.  That I don’t know is the only response to, and yet still grossly insufficient.  There are I’m sorrys that I want to utter quietly to him, that I want to scream and cry in frustration for him – wanting him to know that I’m sorry this happened to him, that he didn’t deserve it, that I wish it had happened to me instead – all the while making clear to him all the reasons I’m not sorry – not for a single second that he is mine, that I wouldn’t want anyone but him to call my son, that there have been four long years now that he has made me proud each day without ever knowing why.

But he knows now.

I thought we had more time.

5 Things to Keep in Mind While Raising a Wild Child

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The crib used to contain them, provide some sort of barrier between them and the ground. And then one day, they get brave enough to climb over the “great wall,” open the door, and look at you in a whole new way. It’s the beginning of their belief that limits CAN in fact be stretched, altered, and broken. The world becomes exciting in a whole new way.

My son has not stopped moving since he penetrated the wall. I have been told, “Oh, it’s a boy thing,” but I have seen many a little girl with the same crazed look in her eyes. The madness that only comes from being born a Wild Child. Over the years, we have tried to adapt to some of his ways because it has become very clear he is way too resistant to many of the ways of the less wild. He is house trained, but that’s where it ends. When he gets out in the world, he is an explorer wanting to find out everything there is to know about everything by running, jumping, or clawing his way towards his discovery. He is complex and emotional and on a mission to completely exhaust his parents, bringing them just to the brink of insanity before gently easing them off the ledge with a sweet kiss and perfectly timed fart in the face.

He is the love of my life, and I truly wouldn’t change my son for anything, but come on, some days are just relentless. Here are some things to keep in mind if you find yourself in the same place:

1.  Surround yourself with compassionate people.  Let’s face a fact that is hard, but true. Some people suck. I’m sorry, but some of them just do. A few weeks ago, I took my 4-year-old son to the bouncy place. With all that energy, it’s the perfect outlet for him. I have been in some uncomfortable situations with my son. I am constantly apologizing for his behavior, even when I sometimes shouldn’t. But there I am, apologizing my way through play dates and get-togethers. But on this particular day, there were two other moms in one of the bouncers with much younger kids. My son was bouncing up and down with a perm-a-smile on his face. I apologized because I could tell they were clearly annoyed. Ignoring me, they actually got out and gave my 4-year-old the stink eye. Never before had I spoken up, but I couldn’t help myself. He actually had done nothing wrong, and it hurt. I said something about how horrible it was that they allowed children to bounce in the place. One of the moms just rolled her eyes and moved on. People suck. Aren’t all mothers on the same journey? Shouldn’t we be united or something? I don’t get it. Why is it so difficult to give a nod or smile? And the looks when my son is actually having a difficult time controlling himself, they can sting. I don’t have time for it anymore. Surrounding yourself with people who get you makes all the difference. My days are much more enlightening the more I fill them with empathetic ears and a heart big enough to care about all kinds of children, not just the “easy” ones.

2.  Erase jealousy and embrace gratitude.  I will admit that, on more than one occasion, I have walked by a story time session at the mall and become taken over by envy seeing all the children lined up, sitting on the carpet, listening to words being read to them. My son does not sit well. He never has. I used to check his butt for some kind of hideous rash that perhaps hurt really badly when he sat on it. Nope. It’s just not something he is programmed for. Maybe his species has adapted over time and the only way for survival is constant motion. I feel it when I go to his classroom early for a holiday party, and I feel it at a restaurant. The green-eyed monster emerges. I secretly wished my son were like that— following all the rules easily and sitting like all the other kids. But that’s not my reality. So how do I make the jealousy go away?

I embrace gratitude. I have a healthy, energetic, 4-year-old boy, and I am grateful. I check on him several times at night before I go to bed. It’s my opportunity to stare at what I created and to just take a few minutes to breathe and reflect and just feel gratitude that this boy is mine for a short time. I try to remember that one day that untamed energy will be harnessed into something more controlled, into a passion for what he loves. And my energy will be spent cheering him on.

3.  When in doubt, fire a heat-seeking missile.  Or a torpedo. Take your pick. My son can be more than just difficult sometimes. Some days begin with him climbing into our bed and kicking me in the face as he carelessly steps over me. And then the fun begins. He’ll cry all the way to school because we forgot his special blanket, and then he’ll cry the entire way home after I pick him up because I brought him the blanket, which he says “lives” at home and therefore does not belong in the car. Sometimes it seems like a reality show. Perhaps Survivor. We spend the day manipulating each other to get the desired outcome we each want. Pretty much every time we go to leave anywhere, I have to tell him goodbye – as if I’m leaving without him – just to get him to come with me. Then he runs toward me all upset because his horrible mother is leaving him. When he wants something, he asks me while shaking his head yes. I must say, his method is very powerful. Then when he hears “no,” the anger takes hold. The back and forth can be exhausting. I get so irritated when things that should be very easy suddenly become very difficult. What I have to remember though is my little man’s weakness. The kid can’t resist a full-on tickle attack by heat seeking missile fingers. When the missiles have been launched, that smile I love quickly fills his face. He is putty in my hands and finally ready to put his shoes on, or get in the car. Making him laugh when he is frustrated or angry has helped us both. It’s not a guarantee, but it’s a start.

4.  A good ugly cry can actually be quite beautiful. I used to think that after a bad day, a cry meant some sort of failure, like it was the final screw up because I couldn’t hold it together. Maybe it’s because, when I was young, I used to cry all the time, and for whatever reason, I would then add on a secondary session of crying because I was so upset about the first cry. Now,  I look at a good cry like a shower of sorts. I feel a little more refreshed afterwards and ready to move on and deal with whatever I need to. A good, devastatingly ugly cry is sometimes just the thing to make for a beautiful rest of the day. Don’t get me wrong, life is good. In fact, in the past I have cried because I felt terrible about myself that I was upset enough to cry when my life isn’t really that bad. I used to think, “There are people living on the streets. Why do I have the right to complain?” Well, unfortunately, I am human and flawed by design, so I do have to cry sometimes because I do get overwhelmed. For example, the other day my son spent a majority of the day in time-out for hitting. I began to realize that the vibe in the house was way off – too negative. It was a long day. He was really pushing me, and as much as I told myself to stay calm and ignore the behaviors, it got to me. The real problem is that the world still revolves and a multitude of things happen in our lives at the same time. My son is not listening, a family member is sick, there are bills to be paid, friends to help, dinner to make, and the list goes on. And these are everyday problems, and they can be handled, maybe sometimes just after a good, hearty cry.

5. Prepare for that which you can not prepare for. George Washington said, “To be prepared for war is one of the most effective means of preserving peace.” I think this stands true when raising wild children as well. I will never forget being at a restaurant with my son when he was younger. As usual, he would not sit still and was becoming louder and louder. A woman sitting at a table next to us handed my son a book. She was prepared. It seems so simple, yet a giant light bulb went off. The normal toys I brought with me were just that. They were typical, boring. So now I travel with enough ammunition to completely blindside the enemy. Whether it is a coloring book or a homemade laminated placemat with a dry-erase marker, I am ready with a bag full of distractions. I never realized the impact of distraction until I got creative. I have had people tell me a child needs to learn how to just sit at a restaurant without any distractions so they can get used to it and learn. Ha! I have been tempted to have them take my son out to eat. They would probably end up letting him dump out all the salt and pepper shakers and use the mustard and ketchup to make a Pollock painting on the table just to keep him busy and their sanity in tact. I don’t want to keep my son out of situations because it’s easier. I want to keep throwing him in the water until he learns how to swim. Sometimes you just have to start by using floaties.

Related post: What You Don’t Know About that Unruly Child