Tag - identical yet different

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Clouds in the Sky
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Sneak Peeks
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The Five-Year Epiphany
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Today
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Of IEPs and Other Life-Changing Meetings
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Spike in Awareness
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Report Cards
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School Daze
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Birthday Bash
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So Lovely

Clouds in the Sky

I’m straddling two worlds. Here I am in the NT world, walking my son to school, chatting with other mothers about reading levels and volunteering in class and play dates. And here I am over here walking my other son to his bus, his hands flapping with excitement as it rolls up, handing the aide an extra bag because we’re working on potty training at school this week and it requires daily replenishing of dry clothes.

The two worlds collide in a way that surprises and unmoors me. Sam has been invited to a classmate’s house for a play date that I have yet to schedule because of John. The other mom knows of John but has never met him, and so instead of tackling the issue, I hedge. What will I say? Can I bring his brother, oh his brother has autism and will probably perseverate in a corner… could Sam come over to play by himself? And do I really let my 5-year-old with his own set of issues go to the house of someone I barely know?

How do I manage John’s needs with Sam’s increasingly more neurotypical ones? Just the fact that he’s already making friends at school tells me that he needs to have as many of these experiences as possible. Especially since the perceptions that some seem to have of him make me squawk with indignation.

Like at back-to-school night. I approached Sam’s teacher to say hello and to tell her that after hearing about their day, I now understood why he was obsessed with drawing and cutting out clouds. He always seems to process the things he’s learned by recreating it as soon as he gets home. She greeted me warmly and said, “Sam is so smart! What a unique way he has of seeing things. When he shares his ideas in class, the other kids always seem to get it.”

Another mom was waiting for her turn to speak with the teacher and overheard our conversation. Later she said to me, “Wow, Sam sounds so smart!” I agreed, saying something about how he always surprises us. Then she asked, “Is he smart like Rainman?” I’d like to say I had some witty comeback, something to make her wither like I did on the spot. But I was so taken aback that the most I managed was “Uh, no.”

It made me immediately regret being open about our road to diagnosis back when they were barely two. There are too many people who only know the label. Too many whose expectations and impressions are already tainted by a word, a word so loaded in this age of Jenny McCarthy and Autism Speaks, that we butt up against ignorance all the time. Next thing I know this mom will see the latest Autism Speaks video and assume that’s what my life looks like and it infuriates me.

Here’s the thing: autism is just a word. It’s a word that encompasses too much in my opinion. Autism is a spectrum of disorders and no person has the exact same chaotic mix (even my identical twins). Autism Speaks would have you believe that not only is autism a dark menacing cloud, but a black vise imprisoning our children. Yes, they want people to contribute money to their cause. Do they need to instill fear and spread misconceptions in order to do so? Can’t our lives, challenging as they no doubt are, be represented without alienating the autistic community and a good number of parents as well?

What about the parents of the newly diagnosed who are looking for hope? What about my own children? What if Sam saw this video and thought that’s who his brother is? What if another child said to him My mom says you have autism like Rainman, and he thinks of himself this way, as someone with something that other people would wipe out? What about all the others out there, not bad people, but people whose only knowledge of autism is the version spewed by Autism Speaks?

Yes, I often feel despair. But this video left me feeling the worst despair I’ve felt in a long time.

No, our lives have not been easy, but whose have? There is no doubt that autism has set us on a course we could never have imagined, but now that we’re on it, could we imagine another? You can’t separate autism from my boys any more than you could separate clouds from the sky. Depending on the light or your perspective, those clouds are either menacing and dark or beautiful and an intrinsic part of the picture.

Some days they are both, I am human. But if I lived under that dark cloud all the time, what kind of mother would I be?

How about instead of the fear-mongering, Autism Speaks works harder to talk about the therapies and supports that could make my boys’ lives easier, not more difficult? No? How about the creation of a new organization that spreads a kinder message of inclusion, hope, and acceptance, that educates others on autism’s many facets, both good and bad? That would be a group I could put my support behind, that would be a message for which I would walk on the National Mall.

Autism is not the reason life is hard. Life just is. It can also be spectacular and has everything to do with how we feel on a cloudy day.

Sneak Peeks

Two kindergarten classes in two days. A “sneak peek” at what next year will look like — next year, which starts Monday. And this is the way the story unfolds: one boy will have one teacher and 22 classmates. The other boy will have one teacher, five paraeducators and 5 classmates. Both will have weekly visits from therapists.

Sam’s sneak peek at his new kindergarten class was full of laughter and reading and non-stop talking. It won’t be a surprise to those of you who know him or who follow here that he loved (loved!) being the center of attention as his new teacher showered him with questions. He excitedly took in where he’d sit to work, where he’d sit for circle time. He found his cubby and ran over to touch his name. He took in the posted schedule on the wall. Then he asked: “Where are the feelings?”

“Feelings?” she repeated, confused.

“I’m really good at all my feelings,” he continued, pacing around the room. Finally, he spotted them on a far wall — a poster with nine faces depicting nine different emotions. “Here they are! See?”

His new teacher, Mrs. W., laughed and asked, “And what are you feeling today, Sam?”

“I am happy…” he said, following along with his finger, “…and I’m excited… and I’m also surprised.”

“Surprised?” I asked. “Yes, I am surprised,” he said, “It is good.”

After his first look last spring, it is great.

*******************

On the way to John’s sneak peek, I told Sam that it was John’s turn to be the center of attention, that he needed to let everyone focus on John. I reminded him that he had had a great time the day before while John hung back with me. “Do you understand?” I asked. “Yes,” he said.

As we walked in, John deftly avoided everyone who approached, turning his back to the room after finding a computer. I spoke quietly with the new teacher and met the team of paras and after ten antsy minutes of being quiet, Sam ran to a shelf of toys and said loudly, “John! They have Sesame Street books here!”

John eyed that corner of the room and eventually, slowly (lest anyone think it wasn’t his own idea), made his way over. He took the book from Sam and sat down to flip through it, his other hand gripping two small cars. When done, he dropped the book and ran the perimeter, learning every surface with his free hand, until his attention was pulled to the center of the room.

Another boy, a new classmate, played with a motorized race track and every time the cars passed go, they shot through with a loud whizzzz. John approached him and began to laugh and jump. He watched the boy’s movements over and over, each time more and more excited. I smiled, then laughed myself — amazed when John carefully placed the two he had been gripping on the track, trying to copy what he had seen.

It was almost more than Sam could bear, he wanted desperately to get in on this game. But he hung behind his brother and laughed and jumped too, it seemed to me with love.

*******************

In the car on the way home: “Mom, why can’t John go to my school?”

I start thinking fast. “Well… John needs to go to a school where there are a lot of people who can help him learn how to do things that you already know how to do.”

“Like what? What, Mommy?”

“John has something called autism.” Really? Did I really say this word aloud? Like that (insert snapped fingers) it took shape and hung between us. If he repeats it back to me… what will I…

“Autism? Autism. What’s autism, Mommy?”

Sh*tSh*tSh*t.
“Um, well…you know how sometimes when you ask John a question and he doesn’t answer you? Sometimes autism makes it hard for some kids to talk.” Oh, I’m so unprepared for this discussion, really unprepared. I look in the rear view mirror and see his worried face.

“Mommy, I think we should take John to the Talk Doctor. To make him talk.” What a great idea. I wish we could end this conversation here, but no… “What happens if I get the autism and don’t talk?” So many mine fields here and how do I explain any of this to a five-year-old who also may or may not be, probably is, on the autism spectrum?

“Honey, autism isn’t something that you can catch, like a cold, people are born with it.” At least this is what I believe, don’t yell at me.

“Was I born with autism?” Yes? No? Maybe? Can I exit this conversation stage left?

“Um…well, honey. You also had a hard time with talking when you were real little, but now you talk great, you talk a lot! You’ve had a lot of help with talking, just like we hope John will get in his new school…” How ironic that I get to avoid eye contact right now and how happy I am about it.

And so the story concludes for now: the mom wipes her eyes and continues to drive — the subject abruptly changed to Thomas trains. She will have, for the first time in five years, a week yawning with free hours that are hers and hers alone. She sighs, afraid she will be sucked into that void just to disappear — what will she do if she’s not taking care of two? In the back seat, two boys so perfectly themselves are framed together in the rear view mirror.

The Five-Year Epiphany

Dear Boys,
You are five now. Five! Today as I watched you run free through the grass and circle the house, here in one of the most lovely places on earth, I realized that for so long I have kept you tethered to me. I realized that my grip on you must loosen and give, that I must live with my fear of losing you. I know, you’re still only five for pete’s sake, but I must give you both room to be. Despite autism, I have to let you breathe.

Sam, you talk non-stop, it is your favorite sport. You roll words on your tongue and at times, pelt me with them. You are quite capable of making a deal. I know that when I tell you to stay close to the house where I can see you, you will (grudgingly) do it. You will parry and counter-offer, but so what. We are communicating and I know you’ll stay near, stay safe.

John, for so so long, a wide open space has seemed to mean the freedom to run away from me. Or perhaps it was simply your running to something — the sound of the wind, your face upturned to the sky, squinting at the sun. Whether a parking lot or a field, you were off, oblivious to danger. And there I was, sprinting behind you, scared and trying to stop you. Knowing that I had to catch you, while panic chased me. I have never felt that you were safe if your hand was not tightly clasped in mine.

Today was so sudden, you escaped together. We pulled into the drive with a car full of groceries and after getting out, my arms full of bags, you took off. Together you took off up the yard laughing. I yelled, “Sam!” and of course you ignored me. John, you soon disappeared around the garden and behind a tree. I dropped the bags and started after you, a tight knot forming in my chest. I yelled again, “Sam! Help me find your brother!” and you were great, you did, I think sensing my urgency.

There you were, John, up at the garden, going around the perimeter studying the beautiful lines of its fence. I saw the pure joy on your face as you squinted and flapped. You did not take off down the driveway and down the street where I imagined you would. I guess that’s when I started to breathe again myself, hot and sweaty from the effort but so relieved that you were still here.

I wish that you could parry with me like your brother, that I could know that you understand. But I think I’m beginning to see that you do, even if just a little bit. I’m afraid, though, that I will still always reach for your hands. My gorgeous, gorgeous boys — I love you enough to start letting go. And I realized this today, the day you turned five.

Today

Sam and I pick up John every day from camp and every time, Sam runs ahead and opens the door, shouting, “I’m here!” so that John’s teachers can all say, “Sam! Hello!”

But today I reached the door first and saw John’s beaming face as he jumped up and down. He obviously had been watching the door for some time.

“Hi!” he said, rushing me — a short, skinny linebacker with incredible strength.

“Hi!” I replied, gathering him up for a spin, both delighted and surprised to hear his voice. It was his voice along with the intense beam of his eyes and it took my breath away.

“Mommy’s car,” he said, pulling me to the door. “Open door? Let’s go.”

Of IEPs and Other Life-Changing Meetings

(or “So then? The pendulum swung this way and knocked me down…”)

Two days ago we had Sam’s IEP meeting. At the beginning of the year, if anyone had asked me whether Sam would be going to kindergarten, I would have said Of course he is. But with a birthday so close to the cut-off date (making them a very young five), I’ve been second-guessing myself for months and carrying around the weight of what feels like an impossible decision. What is the best thing for Sam? He’s so quirky — would it be better to be the youngest quirky kid in a class or the oldest quirky kid? Is he ready to be mainstreamed with a bigger class than he’s ever known?

The whole issue has been muddied with an opinion from just about everyone. The general consensus seems to be that those who decided to redshirt their child have not regretted it and those who didn’t wished they had. It’s the gift of time! people say. It doesn’t help that several parents in our neighborhood are keeping their own neurotypical-summer-birthday-children back a year. If they can’t handle it, then how could Sam possibly handle it given all of his, um, challenges.

We were so unsure about what to do, that we pre-registered him back in early March (with a non-refundable $400) in a smaller, church-based kindergarten program. I had spoken with others who were sending their kids here for one year and THEN starting them in public K. We did this to be prepared, just in case. I was loathe to pay this deposit but with only 20 slots available, and a line out the door on registration day, we felt we had little choice. And when I had broached the subject with his Pre-K teacher, she suggested that an extra year never hurt anyone and would give him a chance to catch up with some of his peers.

So we were quite unprepared for his entire IEP team to say, without even the slightest hesitation, that he is READY. One by one they sang his praises and said it would be a disservice to hold him back a year. He loves to learn, his reading and math scores are above grade level. Even the social/emotional piece that so worries us has come a long way in the last three months. He is such a happy child, everyone loves being around him. He is so empathetic. One day, he went up to a classmate who was having a bad day and said “You are grumpy. Let’s find something to make you happy. See? This is what happy looks like.”

I burst into tears then and there. It was almost like someone making the decision for us… alright it was someone making the decision for us, but it felt right. It had always been my first instinct to send him but I had lost so much perspective.

I’ve been sailing pretty high ever since, so relieved to have this weight gone. I’m so proud of him, so in awe of how much he knows and hearing how special he is to this team of educators who have done so much to prepare him? Icing.

************

But.

It’s never easy or black and white. It’s definitely not rosy all the time. I am well aware of this, I should be, and yet I am easily taken by surprise. Seeing him next to his NT peers can either be reassuring (he’s going to be fine!) or alarming. This morning we went to his new school for kindergarten orientation. We had an appointment time along with about eight other children and their parents and I had prepped him before going. He was very excited.

But the building was new. And the children were different. And the teachers were not ones he recognized. And there was a lot going on in the room — too many grown-ups and too many things being asked of him. They moved the children around four different centers, but in five-minute intervals marked by a loud bell. Centers are certainly not foreign to him — the speed and cast of characters was. They spoke really slow and asked questions that Sam already knew the answers to (Can you tell me what this letter is? Can you cut this? Can you draw with this crayon? Oh why not? Here, make a flower! Go over there, let’s make a cookie!). But he could not or would not. He refused.

Soon he started with the nonsense talk (“I will NOT color, I will EAT the colors!”). The reaction to this environment was almost a physical one. I watched it spread from his face and head to his hands and legs. Soon he was pushing away from the table and running from one room to the next, yelling “No more school today!” In other words, sensory overload: too much new, too many loud people and sounds, too much to process. As I chased him from corner to corner, it was almost too much for me too. The eyes of the other parents on me was more than I could bear. The looks I saw in some of the kindergarten teachers made me want to weep. I could practically read their thoughts from the widened eyes and nervous glances. Is this kid really coming here?

There was an army of parent volunteers and I recognized several from the neighborhood. My face grew warm and I felt a storm gather behind my eyes and temple as Sam continued to spiral down. When one hand, kind and reassuring, landed on my shoulder it was a relief to cry again, although I wished I had been able to save it for here, for now. Thankfully, someone Sam knew from outside school came to my rescue and took him around the room, trying to identify the pictures of feelings on the walls.

He rushed over to me and said “Mommy, first I felt a little bit shy, and then I was scared, and then I was embarrassed. Then I felt proud and happy!”

As difficult as this morning was, I’m not second-guessing the decision again. I know that the special education team is ON this. They’re giving him a teacher familiar with Sam’s unique needs. I met her and immediately relaxed when she said she knew this was not representative of how Sam is every day, that these were exceptional conditions. And now that I’m home and remembering his face, so earnest and true, telling me how he identified his feelings (and knowing how hard that is for him to do even under the best circumstances), I know that I owe him my 100% absolute belief and trust.

The love goes without saying.

Spike in Awareness

After his day of perseveration, Sam spiked a fever right before bed time: 102.6. The next morning he awoke soaked and lethargic and warm. Mommy, clean Sam’s sheets, he said, right before curling up on the couch under a blanket. He stayed home from school and as I watched him lie there all still and quiet and so not like he was even 12 hours before, I wondered if this sudden illness had something to do with his unusual afternoon.

This morning, two days later and well again, I watched as he studied John’s finger movements at the breakfast table and then brought his own fingers up and tried to position them the same way. Oh… I see. Imitation — that’s good, right?

Whatever was going on the other day, I am past it. But it sure made me realize that I’m scared. Watching Sam retreat into a place I’m not used to seeing him go really shook me up. I’ve written before how I often “forget” that Sam has autism. His autistic traits are not as obvious as his brother’s, and I’m afraid that I still expect too much of him, get frustrated too easily when he gets stuck or has a meltdown or seems like he can’t hear me.

I have secretly thought: If something were to happen to us, Sam will take care of John. But who will take care of Sam? Sometimes, realizing that both my boys have autism crashes over me like it’s the first time I’m hearing it. Like I don’t live and breathe all things autism, like my blog doesn’t contain the very word? But then it settles in again and I’m okay. A little more aware and okay.

###

Today was Sam’s IEP meeting. It went well, he got what we wanted for him, but I felt inexplicably sad that we’ll be changing up his world in a pretty major way come fall. Typical preschool in the a.m., same terrific special ed. program in the afternoons but with a new teacher. We declined ESY in favor of sending him to OT camp and as a result he’ll be separated from his favorite class buddy, C, this summer. Hearing about their interactions at school nearly made me sob right then and there with doubt.

I try to recall feeling similar last year when we were about to leave the cocoon of Early Intervention, and I can. I just want him to stretch, to have new experiences, to learn flexibility. All things that I could benefit from… this is not lost on me.

Report Cards

Both my boys brought report cards home last week.

I’m not surprised that Sam is more advanced than the other kids in his class with his spelling, reading and even math. Next to Thomas those are his favorite things in the world. I’m also not surprised that even though he is very verbal that the language coming in is hard for him to process. He needs a good amount of time between a directive and being able to follow through. It used to frustrate me before I realized that no, he was not ignoring me, he was just “processing” my words. If I give him enough time, he always answers me appropriately. One lovely thing is that his teacher said that he was the only one in her class who scored positive for empathy, that he often hugs and feels sad for others when they’re sad. And yet — he is still challenged socially. He adores another boy, C, and constantly seeks him out to play, but not always in the best way. Sam’s tendency is to hug, lunge, tackle — with mixed results. If it’s at home and John is his target, he can get his butt bit. Literally. I’m encouraged that he does appear to be learning from C that he does need to back down sometimes.

At the other end of our spectrum, John is not meeting several of his more ambitious IEP goals. His team would like to see them rewritten, to make them more attainable for him. They invited me into class to observe for an hour last week and I’ve been living with a huge lump of sadness and guilt in my chest ever since. All I can say is that part of me, no matter how accepting I am of their diagnoses, no matter how far I’ve come since we first heard the word autism, a part of me dares to hope that John will improve. It’s the hope that as rapidly as Sam learns new words, that is how fast John is absorbing the world he lives in, that even if he is unable to tell me about it, he will someday. Our lives are so busy, so packed with school and activity and therapies that I don’t often have time to see, to really see.

Or perhaps I’m just scared to see some days. Hope is so tenuous, so fine a thread, that a good gust of wind can make it waver.

At home I’ve watched him shrug off Sam, his father — even me at times — with cool indifference. He is still largely nonverbal. I had hoped though, that what? he was a different child at school? Well I did get to see. I saw how John simply will not look at anyone, how he strained to not make eye contact. I saw how he seemed limp, tired, unhappy even. I am mindful that this was a tiny glimpse into his day, a snapshot. I remember other glowing reports about words uttered, smiles offered, eye contact made. I cling to these reports even as I indulge my mommy fears yet again. I am wallowing right now, a terribly self-indulgent activity that’s not doing him any good. I am scared, plain and simple. How can I make things better? Is this the wrong program for him? Will he ever talk to me, to his brother, to a friend? Will he ever have a friend? What if the answers to all of these questions are just, well…no? What if he never has those connections that every parent wishes for their child?

And is the universe just waiting for me to let go?

School Daze

The hardest part about your 3-year-old son boarding a bus and going to school without you is his crestfallen twin brother left behind. There really is nothing to make right this grievous mistake.

“Why Mommy? School bus Sam? Sam! Go school bus!”

“Sam, how about we color or get out the playdough?”

“See teachers? See John? Go Mommy. Door open!”

Why did this nightmare scenario befall us? Because Sam’s program doesn’t start until after Labor Day. Every morning this week I’ve had to prep him. “Just four more days (three, two, one) and you will get to go to school on the school bus too, buddy!”

“School bus now!”

Who would have thought that having just a singleton for a mere three hours, five days in a row, would be more high maintenance than my regular 24/7 two-fer? He is so distressed about this unexpected turn of events (after all, it was Sam who went to “school” over the last year while John and I filled the time). And I don’t blame him. I hate it when I can’t recognize my routine.

We’ve been to a couple new parks, the library, Target of course, even the toy store — hey, I’ll try a bribe.

“See John? Sam see new teachers?”

When that school bus pulled up, he was yanking me down the drive, so excited to see the big yellow monster chug to a stop and discharge his brother. So happy, in fact, that the only thing he could say was “John!” — the school bus forgotten.

And John. Well. The first day he got on that bus, I waved to him through my sobs, his little face looking at me with — surprise? betrayal? — as they drove away. The second day he cried a little when he got on, as if to say “This again? I think I’d rather stay home.” At the end of his second day, he got off the bus singing. I don’t know what he was singing, but he was happy. All reports indicate that he’s adjusted super well to his new school. And that’s an amazing thing.

Birthday Bash

We have quietly turned three…


Although, it wasn’t really very quiet. Some insanity had me make not one, but two complicated cakes and I am so not a cake person! But the sad thing is, now I am. I am doomed to do this every year on their birthday. I blame mcewen.

Sam’s Thomas the Train cake…

…and John’s Blues Clues cake…

Thank heaven for terrific sisters and understanding husbands. Nine hours later and we had two masterpieces. And a frazzled mom. Of three-year-olds. Wow.

So Lovely

You know, I did something right.
Something that keeps me alive.
Oh, you sweet little babies.
When you came you let me know
I was finally happy.
You knew me before now, didn’t you?

—“So Lovely” by Lisa Marie Presley

I was going to write a post about causation, prompted in no small part by the very thoughtful post at Autista. It’s been rattling around in my brain for days now — as I wash dishes, read the paper, drive to the store. I even had a first draft written where I went into some detail about what I think may have or may not have “caused” my boys’ autism (for the record, I believe there’s a genetic predisposition). But I’ve decided to scratch it, at least for now, because in the end it doesn’t matter much. They are who they are: two special, quirky, beautiful boys who bring me endless joy. I would not change them, their essence, for anything in the world.

This is what I would do:

I would paint them for the world, if I could paint, in riotous shades of teal and violet and magenta, twin whirling dervishes so alike and yet so different.

And I would film them as they run, screeching after each other through the kitchen, to the tunes of some chaotic kid rock opera. Philadelphia Chickens anyone?

I would sing (though sadly I can not), something a la Kate Bush (she has that slightly manic, happy quality I’m thinking of) as I lift and spin them around and around until we fall to the floor, exhausted and rather pleased with one another.

Lovely, no?

But I would change others’ perceptions of them as we make our way in the world. I would give a mini-lecture on the autism spectrum to every stranger who stared at me at Target, if only I had a spare minute between therapies. I would too.

And I also would, if I could, change the difficult moments — my moments of doubt and sadness. Doubt I have as their mommy that I am not doing enough for them. Doubt, also, that perhaps I’m doing too much. Sadness because for every spectacular day there are many others that are not. Sadness that sometimes my world is going too fast for even me to process.

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