An overwhelming view of the world (sensory overload)

Nick is absolutely petrified about walking the halls of his school, and after a quick interview with him, this is what I’ve come up with.

 

He finally told me that his speech teacher made him go back to his regular class by himself, which is walking down two large hallways to get to his regular classroom—the safety zone.

I asked him what had happened on his journey through 2 halls…did someone upset you? Tease you?

He told me No, but he did tell me that the other kids bother him.

“What did the kids say?”
“Nothing, they just bother me.”
“So you walked the halls by yourself and none of the kids said anything to you?”
“No, but they just bother me.”

The only conclusion I've come up with after this interview with my not-so-articulate boy, was that he most likely became very overwhelmed (sensory issue) by the rush of other kids walking through the halls trying to get to class on time. I imagine that the speech teacher let him leave to go back to his classroom at the sound of the bell, and the start of a new class -- for all. And roaming the halls with a flood of students rushing by him was probably so overwhelming (sensory overload), that he got scared. I imagine it’s like a little boy who had temporarily lost sight of his mother at a New York City subway station and trying to make his way through the flood of loud, obnoxious people without suffocating.

I asked him what it was like walking by himself.

He got very upset and said, “It made me very nervous,” he said, clearly distressed.
“Did you get upset, did you cry?”
“A little bit”
“But you made it to class alright and you were fine?”
“Yes, but I’m not fine...”
“Okay buddy, I’ll write a note.”

And thank God this is the last week of school, because I think we both could use a break.

Tantrums and destruction can occur out of the blue

On Friday a few hours after Meghan got home she started freaking out (a sloppy, but easy way of saying that she was out of control and I needed to get away from her, and fast). I was sitting next to her in my room, just hanging out with her on my bed, watching the news and enjoying a relaxing moment together, like we’ve done so many times before. But then, out of the blue, she started pulling her hair, contorting her face and making angry nonverbal noises. It was a horrifying sight. What was different from how she might have been before she went away to school, was that she was only hurting herself, not grabbing my hair and neck and pulling and pinching me in a similar fit of anger, as she so easily could have done at that particular time. As I walked away and down the hall, I could still hear her freaking out, yanking at her hair and biting her hand. It was awful to listen to and I was wondering if the room that she was in even had a chance against her wrath.

But, she soon left that room and starting running down the hall toward the kitchen, where I was standing. And then I knew.

I immediately left the kitchen and ran down the few steps to the front door. As I was making my way to the foyer, I felt an all too familiar feeling on my head: it was the remains of a cup of ice water and, I think, an apple, that came crashing down on top of me, and I knew from this—an all too familiar sign—that she was smashing-up the kitchen and “in the zone” of real anger. We have a contemporary-style home and the kitchen has a balcony that is open to a stairway and foyer below, and because of this, and when Meghan is having a temper tantrum, I am in the habit of protecting my head from any flying food or objects.

Just before I ran outside I looked at Nick, who was at the next level below (the family room), and told him to take cover, and he did. Now how terrible is that? Huh? I have to give my son a "codeword" that means Meghan is flipping out so barricade yourself in whatever room that has a door. Like a warning of a sudden tornado ripping through the house, so take cover!

I ran outside and cursed myself for not grabbing a phone. But at that time Meghan was standing at the doorway where she was pounding on the front glass door, swinging it violently against a plant urn, and getting angrier by the minute. I was thinking about getting into my car to protect myself, but then thought against the idea for fear that both my kids would think I might drive off; or that Meghan would pound on the glass window of the car and I would feel trapped.

Then I looked up and saw her standing at the doorway, yanking and pulling out clumps of her hair so brutally that it scared the hell out of me. It was one of the worst scenes I’ve ever witnessed with Meghan.

Don’t get me wrong, before she went away to her school she would come after me and go for my jugular. Literally. But then it would be over. But this scene of self-inflicting pain: pulling out her hair in clumps and biting her hand so hard that I could see blood on her hand, was so violent that it was hard to watch. I was standing outside in the pouring rain with no coat, no shoes and no phone, just trying my best to get her calm. If I had a phone, I was actually contemplating calling the police for the very first time. It was that scary.

Meghan was beckoning me to come to her and I wouldn’t for fear of being attacked. I mean, she was still “in the zone” of anger, so I managed to run around the back of the house, discarding sharp planting tools that were left out from earlier that day (sounds both disturbing and comical doesn’t it? but don’t get me wrong, I’m am not kidding.) I think I even joked to myself: Hey, lose the weaponry, get rid of the hoe; wouldn’t want Cujo extra armed!! I then ran inside from the back sliding doors and grabbed a phone to call my husband and said: "get home ASAP"--another codeword. ETA: 30 minutes.

Meghan went outside to the front, grabbed a glass that was on an Adirondack chair (one that I had out earlier) and threw it on the driveway to break it into shards of glass, thankful that she didn’t aim it at the house or car window. At that point I really felt like I had no choice but to lock the front door and lock her out.

She then started banging on the front door, hard at first, then harder; turning and wiggling the door handle so hard that I thought it would pop off. I knew that I had to try to encourage her to come inside from the back, that way she would have time (and a walk) to calm herself from her angry state because there was no way I was going to unlock the front door and have nowhere to run to get away.

Sounds like a violent intruder trying to get me, doesn’t it? Sometimes I think she is.

I was also hoping that by being locked out she might think it was punishment for her horrific acts and bullying. But at the same time I was worried that she might get even angrier, so I ran out the backdoor, running in the rain with bare feet and getting soaked along the way, while rechecking for more random weaponry (I think you would too) and finally persuaded Meghan to follow me to the back yard, which she did after a few minutes, but it took a few minutes. Once back in the house, she starting cleaning up her mess almost immediately-- a good sign of calm, and of atonement because she knew she did something wrong. But I was still standing outside, shivering and watching—just in case I needed to get away.

I know I sound like a wimpy mother to my 14 year old daughter, but I have had the experience of being pinched, bitten, bruised, and hair yanked out of my head to fear.

Just a late afternoon at our household! What’s yours like?!

Humor, humor is very important you know!

I also want to point out that these “episodes,” or her tantrums, can be very random. Sometimes I can almost predict when she is, or just about to become upset--usually a sensory issue: loud sounds, or an unpleasant feeling on her body. I think the antecedent of the previously mentioned temper tantrum was either from the rain (she was outside swinging on the swings when it started to rain), and her hair was wet and perhaps bothersome to her at that particular moment. So bothersome that she couldn’t handle the sensory overload, if this makes sense to you.

And please note that these tantrums are upsetting to both mother and child (and others within the household); they are violent and destructive in nature and not to be taken lightly. I exhibited bits of humor in this story because that is how I handle my life in these situations. Humor makes an upsetting life or situation a bit more manageable and “doable” in the moment.

A Dear Mom Letter

It is true that Meghan may never talk. She can kinda say words, but to make conversation will be a challenge for her due to the severity of her autism. However, she is learning to spell and type in her computer everyday, so I know that even though she cannot speak using her voice, she will certainly (hopefully) learn to speak using her written words.

I actually fantasize about this all the time, as you might imagine. I mean think about it, I have never had a conversation with my daughter and she’s 14 years old. We communicate using some words, but mostly by using her communication book with PECS symbols or by gestures. And if you are aware of PECS and other gestures, then you know it’s not the most comprehensive form of communication!! So I am thrilled that her school has supplied her with her own laptop computer and special software to help her learn to write. She still has a long way to go because she doesn’t understand most words, sentence structure, and what it all means; but we are hopeful because she’s smart.

Which takes me to my next thought: I wonder what she will say when she is able to write for the very first time. What will her first written thoughts be for the entire world to see? Thoughts and feelings that have been unexpressed for over 16, 17, 20+ years will finally be unglued and released. What an historic day that will be for her! Understanding that she has the ability to communicate in a way that she never thought possible. To see her thoughts written out before her—a power that she had only known as a freedom for the rest of the world, and one most taken for granted.

So what would she say? This I cannot say. But I, of course, have fantasized that her very first letter might look something like this example that I will call: A.

Dearest mother,

I just want to say thank you for all that you have done for me over the years. I know that you have only wanted the very best for me and for my future and I love you with all my heart. I feel so free and liberated now that I can finally communicate my feelings and innermost thoughts and I hope to write wonderful letters to you everyday. Let’s email, mom, and get to know each other better.

Love always,

Your daughter,
Meghan
Ahhhh! And so, so sweet! And okay, a bit of an exaggeration on my part, but it is my daydream, after all!! And notice how I would finally be able to have a more rewarding relationship with my girl! It’s like my long lost daughter finally showed up one day to say hello.

But then some horrible ugly thought begins to rear its ugly little head (of course, my nasty alter ego) as I sit there and I think, what if her first letter doesn’t look anything like that one… wonder if it’s something entirely different? Usually a mother’s negative thoughts revolve around only a few things: I’m getting married, mom and I’m only 17!! Or I’m pregnant, mom and I don’t even know who the guy is!! Or how about the classic: I hate you, mom. No, I’m no different from those other moms of a growing teenager except that I think that her first letter just might be to the world and revealed while we all await silently and excitedly hovering over her computer as the words are carefully typed out …

Dear Everyone,

Now listen up all you motherfu****. I am so fu**** bulls*** that I’ve been mute for all these years and now I’m not going to take your fu** bullsh** rules anymore….
I will stop right there because I think you get the idea!

Ugh! But, I’m just a mom thinking of all the possible scenarios, like any other mom would do. But what if her first letter looks more like B than A. Then what?

A silenced room?

People scurrying about as quickly as possible trying to trade in her speech therapy for anger management!!?

What would people say to me as I walk the halls of her school? “Hey, heard Meghan can write now!" (Snicker…snicker…snicker…)
Or “Hey what was Meghan’s first word: f*** or bulls**** ?” (snicker, snicker)
This is something only a nightmare could produce, but it has crossed my mind on more than one occasion.

But all I can say in my defense--because a mom always blames herself for her child’s indiscretions (if that’s what we will call this)-- is that Meghan’s very first words were already spoken and were nothing like scenario B, Thank you very much! I actually remember it as clear as day--as all good mothers remember their kids first words… even though she was 7 or 8, not 2 or 3; but nevertheless, it was a lovely story, one of happiness and fun, and…

You see, one day we were enjoying a nice summer day outside playing on the swings and planting some garden. When it was time for lunch, we went back inside for a bowl of Mac and Cheese—freshly made with love from a box--and an all-time favorite, too! (Yup, lots of love here!!) As I was serving her her bowl of “delicious,” as I used to call it (along with a loving hand sweeping back her long blonde hair—and with a smile, of course…), her fork fumbled in her hand and she mistakenly dropped it on the floor. As she bent down to pick it up I heard her first words spoken so astoundingly clear—at least to a mother’s well trained ear, and I turned to her in wide-eyed acknowledgement of what I had just heard. Her first words spoken clearly, appropriately and without anger or frustration, were: “Oh shit!”

So, somewhere along the way she had learned that if a person dropped something on the floor, the accurate verbal response would be: Oh shit.
Lovely! And what? the mom of the year award should be delivered right here please!!

Maybe scenario B isn’t so far-fetched a scenario after all! And a one-way ticket to a foreign, remote land of the lost for me, please!!

Model Me Kids Training Videos: Building Self-Esteem & Bully Prevention

I received this newsletter from Model Me Kids and thought I would share...

Coming July 2009: New Video Modeling DVD! Model Me Confidence™Building Self-Esteem & Bully Prevention Techniques

A social skills training DVD based on peer modeling for children and teenagers with Autism, Asperger Syndrome, PDD-NOS, and Nonverbal Learning Disorder.

See Previews Here

Topics Include:1. Self-Advocacy 2. Peer Pressure 3. Choosing Friends 4. Building Strengths 5. Visualization 6. Positive Self-Talk 7. Scripting 8. Stay With Others 9. Telling Isn't Tattling 10. Walk Tall11. Group DiscussionVisit Model Me Kids®

Bonus DVD! The DVD is supplemented by a special video geared towards parents, therapists, teachers, and schools with suggestions for supporting bullying prevention. It features Nick Dubin, an adult with Asperger Syndrome and Autism advocate, and School Psychologist Dr. Erica Edelman.

Btw: have you used these types of training videos? If so, please let us know what you think in the comments..

The air of Gemini is among us...

Ugh! I feel guilty this morning because I sent Meghan off to school with black feet and dirty hair.

Ugh!!

In my defense (ahh, we all have one of these, now don’t we??), I had to work unexpectedly and wasn't home to give her a shower before she went back to school yesterday afternoon. When I saw her last (and left her) she was playing outside on the swings and, yes, sporting bare feet with sandy-dirt underfoot, dirty-ishhh hair and ohhhh, there was no time to get her into a shower, nor would she budge if I had the time. And since her father could not help her in this department, then …

I sat at work fully aware that I had sent her to school looking like a wild, homeless child...

Good grief! Minus 1000000 points for me!

You might be wondering why my 14 year old girl couldn’t just jump into a shower and scrub, scrub, scrub on her very own??

Haaaaaahaaaaaaahaaaaaa!!!!!!!!!!!!!!!!!!!!

Allow me to explain. Unless I am there to physically enforce and force her to get into the shower (could take anywhere from 15 minutes to 2 hours….really), while hovering near and about to make sure that there’s actually some scrubbing going on behind closed curtain … like washing her hair with actual shampoo and not just wetting it down and dumping all that (cheap) yummy fruity goo down the drain, while laughing hysterically… , then she will not do it!

yup, my little angel!!!

I just don’t understand it, though. I had once deemed her my little water girl, she loved…loved…LOVED (stolen from Pride and Prejudice) the water, and showering was her favorite pastime of all. I will show you the watermarks on the family room ceiling below the bathroom if you don’t believe me. In fact, she loved showering so much that we installed an outdoor shower (brilliant idea, btw) and we even contemplated putting in a drain in the middle of her bathroom floor—radical idea and it would have worked, but I thought that Meghan needed to learn to keep water inside the tub… there may not be drains in the middle of bathroom floors in her future.

That’s how much she loved water... and no, it wasn’t because she had dreams of becoming a mermaid or that Aquarius is her astrological sign... she’s actually a Gemini. You know, the yin and yang twins... “The air of Gemini is always changing direction.”... and so true it is...

Once upon a time she loved water because it offered her the sensory stimulation (deep pressure) that she was seeking. I knew this because always after a shower or a dip in our local pond, she would be calmer and happier, as if somebody stripped away an undesirable element from her body.

But as of the last couple of years, she has lost that loving feeling with water and I'm not sure why, other than the yin and yang theory...

It’s either hot or cold with her…in excess or nothing…black or white…good or bad…

There’s no just-a-little-lukewarm-grey-is-okay in her book!!

Find out more about you and your sign here.

A time once remembered under lock and key

One day my neighbor came over for a glass of wine, and cried when she saw the inside of my house. Literally. She was a “newer” neighbor and new to the neighborhood (we, ourselves, were new to the area by a little more than a year) and it was one of the first times that I had her over for a glass of wine. She was crying because she finally realized how much harder I had it with my two kids than she did with her one toddler. No comparison! And a no-brainer! But this was the first time she effectively got to see the inside of my house—and noted the alarms on the doors and chains on the two sliding glass doors—as if we had to “lockdown” the house and “wire up” the alarms before we could even go to sleep at night. And she was right.

What was even more interesting was that I had already told her, via a long phone conversation, about Meghan and autism and what our days were kind of like. But seeing is believing, I guess.

She was crying because it had finally sunk in, and it all seemed so alarming to her to “see” that we had to use chains with locks attached to our doors and steel locks on our fenced-in yard gates, that could only be unfastened by a key. She told me something that I had remembered, and would never forget: “Look at how you have to live! You know, no one appreciates what you have to do for your kids and I’m in awe to you, really! I think that you are an exceptional mother and I feel for you, I really do!” And she was fighting back tears while saying this to me.

This form of affection and attention certainly caught me off guard. I was not used to anyone understanding what our life was like living with two autistic kids—let alone, telling me. (And actually, Meghan was the only reason why we had to use chains and alarms on all of our doors and gates because she was prone to bolting away (and bolt being the best word to describe how quick she could escape) and we had nine ponds in our development to worry about, as well.)

It was one of those moments—like an ah-ha moment—where I, too, noticed how we actually lived from an outsider’s point of view. Like, Oh yeah, I do have chains on my doors…isn’t that’s normal? I immediately felt like I wanted to rip off the chains because they suddenly looked so offensive to me, like we were freaks or something. And no wonder why the other neighbors stayed away. Ahhhh-haaaa!!

I’m sure it took a lot for her to say that to me—hence the tears. And she also told me that she would help me whenever I needed it—like a good friend and a neighbor would do for another...

Let me just say that I was not used to hearing that from anyone. And I, too, had to hold back the tears. And previous to that day, my only friends were those who had special needs children of their own, and who not only knew how I lived, but were also the only ones who could relate to my day-to-day life—and who I also equally respect and admire! ;)

I was reminded of this story because Meghan is home for the long weekend (happy Memorial Day!), and on her first night home, we had a cookout (celebrating her birthday) and an outdoor fire, which she enjoyed. But getting her to stay inside during these last two nights was like wishing we still had those chains and locks on the doors.

Progress, or regression?

Though I trusted she would not venture far from the balcony or deck, it still worried me that she was so easily going outside of her own free will. We finally had to say “enough” after 11:00 pm, and send her off to her room—because vigilance is exhausting!! And yes, it was also long past her bedtime (all of our bedtimes, actually), but she still had some pent-up energy to burn, so we allowed her the extra time.

I know that Meghan has come a long way from that fleeing 2,3,4,...7,8,9…12 year old little girl that she once was; and now that she’s 14, she has matured (progressed) in many ways:

She will sit and attend to activities longer than she had before (yes, we’re proud);

she will no longer try to bolt away as she has done twice before (oh, especially proud), and I don’t really have to hold her hand like superglue every time we go out somewhere—but I kind of do anyway, because she has gotten used to this behavior, and now clutches her arm in mine without my asking.

She still does, however, have those “excitable” moments where she will be a bit more hyperactive and move about the house in a rougher way; hence, a once mentioned broken bed…or two.

But, still, a huge improvement from the “lockdown” way of life that we once had lived…. And that I must try to remember this every time she’s home, because you can so easily forget these once remembered moments in time.

Coming home for Surprises….

Meghan will be coming home this weekend for her usual biweekly home visit. This visit will be so much more meaningful for all of us because it’s her birthday weekend: Number 14. Do you remember being 14? I do, I was a freshman in high school and small and scrawny. Meghan is not small or scrawny; in fact, she got her…(um, men don’t wince…) menstrual cycle at 10, so she has been a woman for four whole years now. Incredible! I remember the exact moment that her teacher called to tell me that she had gotten her period; I was driving in my car and almost drove off the road, quite honestly! I was stunned. I wasn’t even a woman at 14, let alone 10. It is said that girls are getting their (okay men, once again) “cycle” earlier than ever before. Some suggest that it is due to diet (overeating) and hormones in food.

Interesting research, here, not sure if it's true or not?

What will also (hopefully) be another treat for her is that we have repainted her room and I bought her a new, fun quilt for the spring and summer (white with pink, green, and blue polka dots—very clean, refreshing, and cute!!). Her room is a huge improvement from what it was before: bright yellow and pink.

Now I have been told that these are the worst colors that one can choose for kids, especially kids with sensory issues since these colors overstimulate the senses and can cause feelings of anger. Pink also increases blood pressure, respiration, heartbeat, and pulse rate. Great!! I’ve been unwittingly working to overstimulate my hyperactive girl for all these years…

So we will soon get to see how she will react to Christopher Robin’s Swing green, since that is the new color of her room. Warm, serene and relaxing. Right there alongside her overstimulating television set!

Nice!

And this is the perfect prelude to the sweet story about her bed. Actually, it’s 1/2 sweet and 1/2 disturbing…

My sister and I grew up sharing the same bedroom (ahh, so sweet? Up until I was about 17 and wanted to kill her, but that’s another story…and now I can blame the pink walls!!) and we had a matching (white) bedroom set to share. And over the years, I've inherited the two twin beds, something that I thought Meghan would want. Anyhow, since her room was too small for two single beds (bad house design), I gave away the second bed (to another little girl who needed it and appreciates it, dearly…. at least that is what I am told!), and I gave Meghan my bed (or my sister’s bed, or my bed, or....oh, who can tell, they’re identical!). So that is the sweet and endearing part of the story; that a second generation is enjoying a nostalgic-inducing twin bed. Mother and daughter sharing one childhood bed…Ohhh!!

And No, that doesn’t make it an antique!!

Now wipe away those tears, because the happy story now takes a disturbing turn—well, sort of. You see, as I’ve told you before, Meghan is a little rough and heavy on people, places and things... including the aforementioned not-an-antique bed, and has not only bent the metal bed frame (quite surprisingly—I thought only Superman or Hulk could do that!!), but has also done a number on the box-spring, too. I would show you a picture, but I’m afraid you might freak… so just take my word for it that we had to gut the entire insides of the box-spring (box-spring without springs… why is that, anyway?) and fix it to make it stable, or simply go without it altogether.

Now you might be thinking, Hey, why not just buy her a new box- spring, crazy people!!? Well, it’s simple, because she will break that one too. And then the next one, and the next…, most likely. So we are going on the concept that we will be repairing it with heavy-duty wood pieces and a good prayer that she will be more gentle with her new and improved not-an-antique bed, since she will no longer be overstimulated by the bright-as-a-stop-sign yellow and angry pink!!

One can only hope.

And, of course, she will also be getting yummy, over-stimulating chocolate cake…

And she can eat it too!!

More, here, about how to handle girls and puberty, autistic and typical girls alike.

A loving moment, not for the weak at stomach

Meghan was home this past weekend, and at one time, she came over to me, while I was sitting and relaxing on a chair, and started stroking my hair.

Ohhh, so sweet. She was actually stoking my head ever so softly and sweetly. It was the most loving and impressive moment that I’ve ever had with (by) Meghan. In fact, her mannerisms are usually those of rough, heavy, severe, that one would usually liken her to a bull in a china shop, because soft and easy isn’t her thing..

But here she was stoking my head with a nice, soft, and easy hand that I said: "ahhh, Meghan, that’s so nice; so sweet! I love you, too! "

As she continued, I reclined and enjoyed the loving moment that I knew would only last for a few more seconds … until my eyes popped open and I said to myself….

Is that the smell of poop on her hands?

Ohhh. Myyyyyy. GOD!!

I mean, it is an undeniable stench!

And what does a mom say/do at a moment like that; a moment that has never before been experienced by her autistic girl. And here, here it was, the sweetest moment of Meghan’s life--finally exhibiting love and care for another human being, and …

the heavy odor of poop still lingered from her hands…

Maybe she was wiping her hands on my head?

So I quickly--but nonchalantly--inspected her hands, and to my relief, no signs of … well, you know.

So I continued to let her caress my head without making a face that said: ugh, gross, yuck, I wanna throw up…

And noted that as soon as the loving moment has past, she would--once again--scrub her hands with soap and water-- ironically, a favorite pastime of hers--soap, water, ahhh, the fresh, clean smell of lavender..

And I would need a shower…

Ohhh, the things we do for love!!!!

And btw, this moment will be remembered minus the poop smell!! ;)

Consequences

Merriam-Webster defines consequence as:

1. A conclusion derived through logic: inference
2. Something produced by a cause or necessarily following from a set of conditions
3. Importance with respect to power to produce an effect

As like a lot of autistic kids, Meghan has a very hard time understanding the consequence of her actions. Sending her to her room wasn’t enough of a consequence (or punishment) for her to stop the undesirable activity or behavior; and as a consequence, I had no way of properly mothering her and keeping her safe, other than constantly racing after her and hovering over her.

Many years ago, one of her teachers (the one I really hated) told me, and the rest of the team, that Meghan could successfully be disciplined by keeping her locked in her room and installing a peephole in her door. Yeah, right. Instead of “services,” I should get a lock and a peephole; instead of a bus monitor, I should get her a leotard (a long, frustrating story). Let me just add, holding her in her room has never worked. She doesn’t mind being in her room, and the one time that she did mind, she threw a toy at the window and broke the window. I got to her just in time before she could play with the shards of glass—which she found most intriguing!!

The bottom line: Meghan didn’t care about being sent to her room or not getting dessert (which she would just find unfair) or not going to the playground; she didn’t understand how not getting these things were in relation to what she did wrong, even if the consequence followed the negative behavior.

I’ve even tried rewarding her for her positive behavior. For instance, she would never sit in her seat belt in the car, so in order for me to drive anywhere, I would give her a piece of her favorite candy (like an M&M) every few minutes for rewarding her for sitting in her seat belt. Unfortunately, doing this just proved to be a desperate attempt to keep her busy while she sat in her seat belt. Either she didn’t understand that she was being rewarded for the “appropriate behavior” or she simply didn’t care, because, when she got full or bored, she would be out of her seat belt like a hyperactive child on a sugar high (hmmm)--and I would be screwed!

One Christmas when Meghan was around 5, my sister bought her a preschool toy that taught cause and effect. The toy was big, bulky, and required the youngster to push a small plastic ball through the top to watch it come out through a door at the bottom: a consequence to the action, place the ball in the top, get it back at the bottom. I thought it was insulting.

Today, I want it back, because Meghan still doesn’t get the consequence of her actions theory. And no matter how much I try and trust that she does, it is always thrown back in my face.

Take, for instance, her ipod. She first borrowed Nick’s even though he told me he didn’t want her to use it because she would bite its shiny glass surface. I told him that I would supervise, and did, until I trusted her with it, and then she broke it.

So we go out and buy them new ipods (a consequence to my misguided actions and a second chance for Meghan) and all is forgiven and good again, until she decides to chew on the plastic earphone cord, and now the earphones no longer work.

And no more ipod for her until she learns that biting the cord will get her “no ipod.”
And how do we exercise that experiment? By eventually giving her new earphones and trying again.

And again…
And again…

Do you see the vicious cycle here? This is not parenting 101 (like it was/is with Nick); this is super parenting for the parents who are destined to go insane!!

And I know in some way she can’t help it; she has sensory integration issues and when she is in the presence of a soft, pliable piece of plastic, she can’t help but chew, chew, chew to her hearts content. And, yes, I have tons of chewing tubes for her to use for this very need, but, apparently, these, too, get boring.

As for the ipod, Meghan is still none the wiser, for she cannot understand the concept: that due to her actions, she can no longer listen to her ipod; just as much a mechanical consequence as it is a behavioral one.

So she bites her hand and kicks me. And still no ipod. And I walk away.

Hmm, there’s always next time, I guess.

Track

I watched Nick at track practice the other day. I had to go early to pick him up for a doctor’s appointment (a psychiatrist appointment for more meds… sigh. A boy of 15 (12 when he started) has a shrink…sigh, sigh, sigh.). So, I got a chance to watch him at track. Now let me tell you that I have done this before, and will continue to watch him at track because I’m so proud of him for even participating in an extracurricular sports program while he is suffering from acute anxiety at school—hence, the need for meds—and for a second year of track, too.

Yay for Nick!!

So, what’s it like to watch him with the other kids—typical kids? Well, my feelings are a bit twofold, as one can only imagine… On one fold, I love watching him, and sometimes I get to see how he fits right in with the other kids... I mean, running is a solitary sport, right? Up until it’s not. Right? Now you must be thinking: what the heck is she talking about; what’s she sniffin’ over there in Plymouth??

Nick is not really a smiling kind of kid. He’s happy, but he doesn’t always show it on his face. So when he’s at track, one can’t tell what he’s thinking… I know he likes track, otherwise he wouldn’t want to go, and I certainly wouldn’t make him. So I have to believe that he is happy in track and enjoys himself—as he has told me that he does, the many times that I’ve asked. The other side of this fold, is that when I do watch him at track, I feel like I’m chewing on my heart, for reason I’m going to tell you now.

On this particular day, it was raining outside and practice was held in the gym, running and playing racing games, etc….

And I had to witness him play a group racing game (team game), and did.

How’d it go? Well I got that ache in the pit of my stomach that said: shit, fuck and damn, why do I have to be here. Why couldn’t I just fantasize that he is doing great in a group activity and smile obliviously and be happy.

Huh? Why? Why did I have to witness this…?

Kids were broken up in two teams: one team on one side of the gym, and the other on the opposite. They were competing with each other for the team that could run the fastest, while touching various lines. The team opposite Nick’s ran first: the clock stopped at 20 seconds…

When his team was next, I held my breath and watched: the time stopped at 25 seconds. And any clueless spectator would have been able to deduct that it would have been a much better time if Nick hadn’t slowed them down.

Shit, crap, damn…was that a moan I heard from a few of his teammates?? And were they all watching me because they knew who I was?

Now I am not picking on my son; I love him dearly—obviously—but he didn’t even seem to try. The buzzer sounded and the kids ran, and Nick was about 10 seconds behind them and he wasn’t working hard to catch up… even slowing at some points.

The heaviness I felt was not that he was slower than the other kids… even on the field, he is slow at the races, as if he thinks that racing is about going as fast as he wants to: like there’s no team spirit, no rules. I don’t care if he comes in last, but I do care if the other kids are wishing and hoping that he isn’t on their team.

Remember picking teams in high school? Someone was always picked last, and that meant that they didn’t want that person on their team.

And I can’t help to think that that’s my son, too.

It’s like chewing on your heart to watch…it really is.

Two kids, two lives

It may appear that I have only one child; at least it feels that way. I catch myself thinking that sometimes while I’m doing basic things: taking a shower, cleaning the house, picking up groceries. I think to myself: is this just a phase in life that everyone goes through, that it happened to me earlier than expected? It’s not like a death where she is gone from me for good, but it’s more like a moving on to a different life earlier than expected… a childhood cut short, an innocence fading--in a way, at least from my perspective. It’s boarding school, really, kids go to boarding schools or else they wouldn’t exist (...ah, boarding schools, that is, not kids). She is there at school enjoying her life of school programs, activities, girlfriends, and even dances--for which I have to buy her a new dress, but will not be there to see her in it, but she is happy from what I hear, very happy.

But it does seem like there is only one now, a boy, to take care of, to love, to dote on and offer him pie. Blueberry pie, this time, and it was good from the look in his eye and the smile on his face…good pie after his hard day at school, how simple is that: a boy’s life, his innocence, a childhood still intact.

Literally Autistic

I don’t know why, but I keep referring to Nick’s ipod as his iphone…With his hands held open and his arms out wide, he tells me: “I don’t have an iphone, Mom!” He thinks so literally and sometimes lacks the creative thinking to substitute the correct word for my misspoken word (or vice-versa??), or in this case, the correct object…even though it sounds almost similar.

Sometimes I just want to yell: Ughhhh!! You know what I mean!! But he doesn’t really. And I’m still trying to work with him and teach him that people are “only human” and that they make mistakes—and all the time, too…. But then we’d just get into the whole discussion of “why are you mad, Mom? He thinks I'm mad when I'm simply exasperated, and thinks that I’m angry when I’m simply making a strong point! And in case you haven’t guessed, I just really want to say to him:

Hey look kid, I’m simply a product of my own mother—one who always appeared to have an extreme, and before her years case of dementia—to say the least.… So I grew up acquiring the fine art, or skill, of being able to play an interesting game of word-decoding and filling in blanks when needed; that is, putting pieces of stories together and making sense out of the jumble. And let’s not even mention being called three different names before coming to my own…and without taking it personally! So give my 42-year-old brain a break, would ya? Besides, a few centuries ago, most people would’ve been on their deathbeds at my age!!

But, of course, I wouldn’t dare say anything like that to my boy! I could never. I wouldn’t hear the end of the discussion—debate—theories—obsession—traumatic moment-of-a-14-year-old-boy’s-life… and the list could go on and on…

Especially the “death at 42” part…Whoa! I would hear something like: “WHAT, people don’t die at 42, they don’t die until they’re 100, Mom (like on the dot), you know that!! So stop making up stories!” Even though he runs—like a racehorse—to the nearest TV when he hears about death and dying on the news (and before the age of 100)… And I won’t even mention how he took the news about how cats only live ‘til about 20… “WHAT, but that’s just a teenager!!” Don’t worry; I’ll spare you—my good, loyal readers—the in-depth details of that particular discussion… But here’s how the rest of the ipod/iphone story went…

“Why do you always get things wrong, Mom?”
“I don’t know… I was distracted.”
“Why are you always distracted, Mom?”
“I don’t know, it just happens to moms.”
“Like Grandma?”
“Yes.”
“Why does she always get things wrong?”
“Because she’s getting older…and that just happens sometimes…”
“What? she’s not old…100 is old, what are you talking about, Mom? Stop making up stories!!”
“I know, I’m only kidding…”
“Is Nana old?”
“Well, she’s 82..”
“Is that old?”
“Yes, a little”
“Yeah, she got all wrinkly already!!”


Hey, got wrinkles?? ;)

Have a wonderful Easter, or Passover…

My Two Stars

Sometimes I wish my kids were this young again… if just for a little while, so I can still pick them up and hug them tight!!

But, of course, I’m glad that they’re older, and some of the mystery of their lives are solved and their futures are a bit more in focus.

I know that Meghan is in a great school for her, and that next year she will be in a work training program—learning a trade that she likes, and taking on a job that she wants, while working on the building blocks of self-esteem, confidence, and happiness—her life. And when she graduates at 22, she will, hopefully, have the skills and the understanding to live as independently as possible in a group home with good friends whom she can relate to and rely on.

And Nick will move on to high school next year and have a teacher that he had back when he was in 1st grade; a little comfort in a strange new place. He, too, will graduate when he’s 22 and move on toward a work program and live wherever and however he chooses—and home will always be a choice for him. Perhaps in his adult life, and maturity, he will find that one special friend to hold on to and walk through life with—a little protection.

And I will be there, too. To watch, help and advocate for them whenever and wherever they need me, just as I was when I first shot these pictures.

Weekend Review

Unfortunately we didn’t have the best weekend with Meghan while she was home this past weekend. She wouldn’t go out with us very easily. We went to an art exhibit in our town that featured one of Nick’s paintings (more about that on my next post), but then that was all she was willing to do. We wanted to walk around Main St, Plymouth and check out some of the shops, just minus the antique shops with lots and lots of old and expensive glassware—Meghan has motor-spatial issues and she and glassware do NOT get along!! (Um, you may want to use you overactive imagination for just a few minutes now, and then do your quick little laugh, thing!! Don’t worry; I do it all the time!) However, she redirected me back to the car and didn’t want to take that walk …

Then we drove by a favorite casual place for dinner (for barbecue and ribs, oh yum!!) And I could just taste the pinot noir that would be waiting for me and calling out to me… come, come and drink me!! But then we "unanimously" realized that the noise and the seating would not work out for Meghan (sensory issues). In fact, if we happened to be at a restaurant that seemed loud and visually overwhelming for her (like TGIFs), then she would not do well, e.g., bite her hand in frustration, not focus, fidget and need to use the bathroom—a lot, and all of these are the fine makings of one huge temper tantrum—that means a smashed up table and coke on our laps (and one mom (me) sucking down some major wine!!)

So we drove along (very quickly) after imagining the “could be” scene at that one place… And, again, usage of your overactive imagination will work fine here, too!! And, so, we drove down the street to the beach. It was a nice day so we decided to take a walk, climb the rocks (our beaches are super rocky) and listen to the rolling ocean and the seagulls squawk….Ahhh, peeeeeace….

But, not really!! You see Meghan didn’t want to walk on the sand. A new sensory issue? Not sure. But this wasn’t the first time she refused to do what used to be a Meghan-all-time-favorite. Sigh!

So we continued to search for a restaurant that she wouldn’t reject, and after 30 minutes and continuous hand sign rejections (um, sign language that does not involve a finger—thank you very much!!) we drove home—humbled, confused, frustrated and hungry. We ordered in pizza and pasta, and Meghan ate the pasta.

Since Meghan has been living at school, we almost forgot how tough just going out can actually be with her. I’ve become very spoiled!! I've forgotten how everything used to be planned and plotted, questioned and imagined… and not without great tension! Nothing was taken for granted, and usually one of us (me) would have been on “alert status” at all times. Tough going!

Consider my new issue: Meghan loves to go sledding so I thought that we would take her to the mountains where there is tubing—I mean she’s doing so well at school and will kind of tolerate more outings…. So here’s the thing: since the snow has melted where we live, I thought that we could take her to the mountains in western Mass. or N.H and go tubing. But, what I’m worried about is that she might not get on the lift, or worse--panic, or that she simply won’t get out of the car after driving all the way there. And then we’ll have to consider food choices and restaurants that she may or may not eat at…. And if you have an imagination and a keen understanding of sensory issues, then the list goes on and on… Should I just forget it or try it? I really want to do more with Meghan, and have the type of fun that I know we can have as a family. I mean--it’s about time, isn’t it!?

But then again, my imagination always precedes me.

And I can’t even tell you how guilty I’m already feeling about going off to Disney World in a couple of weeks--without Meghan. We have never gone on vacation without her before, but for this trip—and to crowded and overwhelming Disney, we wanted Nick to have a real vacation with his parents and his two cousins who are also coming along. A little time for--just Nick--because he’s been so patient with his sister, and has lost out on a lot!!

Oh, the trials of raising two kids with different issues!! I’m sure most of you can relate!?

Nick and his cousins who will soon be enjoying time together at Disney!!

Kay and Flo

I recently saw the Discover Health documentary on Kay and Flo. I know other bloggers have mentioned them on their blogs in the past, but after seeing the documentary for myself I was in tears.

In case you’re not familiar with these unique and incredible women, they are 50 years old identical twin autistic savants who grew up in NJ and have been passed around from family to family after their parents died. Their younger sister took them in and cared for them as if they were her own children, until she tragically died of a sudden heart attack. The women were forced to try and understand the tragedy of death in a world they didn’t completely understand. Their fragile world consisted mainly of their rigid daily schedule—as most autistic people tend to naturally gravitate to or require in order to feel comfortable and secure in an uncertain world. For these women it was the 100,000 Pyramid to feel secure—an obsession with this game show and with Dick Clark, who would later become their hero; their daily ritual; their lifeline and something and someone predictable to hold on to.

The amazing thing about these women was their unique savant ability or savantism, which was their uncanny ability to recall dates and times of events that happened in history, even events that happened before they were born. When asked about a certain moment in history, they could recall (within second) the day, date and time it occurred—like a human calendar. However, when asked about emotions and feelings based on a hypothetical situation, they were not correct in their assumptions.

What also struck me about these women was their innocence about the world around them. They were so dependent on family member for help and daily living assistance that it was sad and sometimes scary to watch. Throughout the hour program, I thought about my daughter and her life—as one might assume—and even though her life and circumstance is and will be different from these women, I learned more about what I don’t know about my daughter. As the world got to know more about these two articulate women, I learned that I don’t fully know my own daughter’s inner-thoughts, interests, feelings and what makes her scared, sad, or depressed. Today, I can only guess what she thinks or feels based on her reactions to things, places, sounds, smells—because she’s non verbal and still has not acquired the skills to write—as a conduit—to share or express her personal thoughts and fears …

As I was sitting there watching and feeling sad for these two vulnerable and unique women, I was feeling even sadder for my own daughter. I cried for her. I cried while watching my daughter’s world of autism through the life of these women, listening to their problems and their joys and trying to understand their thought process …

The program took an interesting turn as the world got to see how they reacted to their hero, Dick Clark, and the news of his stroke, and to the inevitable moment that the 100,000 Pyramid would no longer be broadcast on national television—an unexpected blow. They told the world how depressed and despondent they’d become—as if their world had dropped out from under them. So vulnerable and innocent that it struck me with immense fear—a fear for my daughter in a world that doesn’t understand her. Unlike these two women, she has no true partner in crime, confidant, or a sisterly-bond and a human connection like no other. She has no one person who completely understands her—who can relate and comfort her especially in a world that can be so cold and hostile—and when the definition of hostile seems to be one in which the world stops airing a favorite game show.

But these women have each other to walk through life with--a benevolent shadow in an uncertain darkness—two flowers that sprung from the same seed in its own unique garden. They are one in the same and different from the rest.

So I cried for my daughter who lives in a world all alone. With no one person to truly rely on, to relate to, to converse with and be understood—at least not in a way that speaks to her and that will keep her safe.

When the program ended it appeared that these two women would finally receive the help that they needed and would be welcomed to a group home that would encourage independent living—together, of course—and that they were going to be just fine. But I was far from fine. I wanted nothing more than to hug my daughter real tight and tell her that it was going to be okay and that I would never let her feel alone or insecure or vulnerable, and that I would always be there if and when she needed me—as her benevolent shadow in an uncertain darkness.

But, of course, I couldn’t do that, at least not that day, because she wasn’t there. She was somewhere else--forced to face her own fears, alone, and in the dark.

"What's ...."

“What’s a Dick?”

Oh Geez, here we go again, influenced by kids and hearing things he doesn’t quite understand because he takes things so literally, so I have to try and explain—such as the life with autism.

“Where did you hear that, Nick?”

Impatiently he says, “I just know it.” Which is my cue for: just tell me what I want to know and stop asking me so many questions—such as the life with a teenager…

“Well it references a boy’s penis.”

“Uhhh, N000!” Embarrassed smile.

“It’s not a nice thing to say. Some kids call kids this when they’re just kidding around… but it’s usually said when someone is mad at someone else, like calling someone a jerk. It’s not a nice thing to call someone.”

“It’s not a nice thing to say?"

“No.”

“It’s mean?”

“Yes.”

So I start talking to myself… just not out loud, this time… Please, please don’t tell me that someone is calling you a dick, please, please, oh, please…

“Oh, so my Grandpa is a dick?”

Huh?? ....... “Oohhhh!!!" “Uh hum" (throat clearing uncomfortable moment), "um, in this case, Yes, Grandpa is a Dick ........ his name is Richard and his friends call him Dick!! It's a nickname and a name!!”

Oh My and Phew!! And big smiles all around...

And a lesson learned for this mom—don’t always assume the worse case scenario!!!!

And poor Grandpa..... ;)

My two faces of autism

There are a lot of bloggers and parents of autistic children who look to celebrate their autistic children everyday, and want to tell and show the world how wonderful their kids are, and to choose to look at the gifts that they offer instead of the disorder that they are burdened with. These parents want to offer their voice to speak in support of autism—the fight for its existence, acceptance and its sustainability.

I understand this attitude and this activism. And, personally, I do embrace autism and all of its colorful puzzle pieces to a point. I embrace Nick and his disorder and want the world to know just how special he is because I believe he is special and great—just like you believe that your child is great. So, I’m here to say that I’m standing right there beside you—like-minded parents—who want to promote autism as a positive movement and stop judging it as a negative one for the sake of our high functioning autistic kids and their fragile place in this world.

I can say that I get it, I do. They are our little gifts in life more precious than most and who hold a very warm spot in our hearts, and the hearts of others who have the privilege and open-mindedness to get to know and embrace them.

However, I also represent, respect, and understand the other side of autism that we call: Hell.  For those of you who understand what Hell is, because not all of you do. Whether you like to hear it or not, there is this side to the disorder and it’s often hidden from the world. It’s a sadder, scarier, exhausting and, frankly, a horrific side to the disorder that you know as severe or low functioning. It’s a perplexity that I’m still trying to wrap my brain around and understand, even after 13 years. It’s autism at its worst and I’m not choosing to celebrate it. Not a chance! It’s a side that few people actually get to know, try to understand, or accept because they give up before they can even try and have to institutionalize their child at the tender age of 5. It’s autism at is worst—an evil, hell, devastating, and heartbreaking. And don’t tell me to stop and look on the bright side, or be positive, because there is no brighter side to this side of autism. Trust me, I’ve spent time searching, begging and pleading that there would be a brighter side, at some point, someday; because how can a parent allow herself to feel this way?

A severely autistic child, like Meghan, is not a child, like Nick, who has high functioning autism, and a child you can mainstream into classrooms, and show off in public places without worry or incident. A severely autistic child cannot be mainstreamed. She is not a child you can trust to play in the yard without running off; to trust with a toy without breaking it; to trust to use the bathroom without playing with her feces—even at 13. She is not a child you can talk to and have a conversation with, or to get to know her precious little thoughts and teenage secrets. After 13 years I still don’t know  Meghan’s favorite color because she doesn’t understand the question. Children like Meghan cannot connect, speak or relate easily to you or to me—her mother—or to even speak those precious few words that we all wish to hear: "I love you, Mommy," or even "Mommy" would suffice. I’m still waiting. I’m still waiting to hear her voice. It’s autism at its worst, and I know it just as much as I know autism at its best.

Harsh? Maybe! But it’s true. But I also want to say that it’s okay, too. It’s okay to feel this way. It's okay not to pretend that everything is okay when it’s not. To allow yourself those fleeting moments to feel hostility instead of happiness.  To feel dread instead of hope.  To want to condemn autism instead of celebrating it, because it’s real, and it’s raw and it's hard. And it’s hidden from the world because, frankly, people want to see the hopeful side of autism.  The prettier side. The acceptable side.  The side that we want to show off, celebrate and promote to the world with open hearts, because it makes us feel better.

What's Nose Hair, Mom???

"What’s nose hair mom?”

Ugh!! Here we go again! I know how this conversation will develop… Let me just explain about Nick and hair-- if it’s not on his head, he doesn’t want it. He still stares at the one chest hair that he barely has and wants to shave it…and let’s not even mention his legs and, um, another place… so let’s take this ride together, shall we…? because you're coming along too... too bad, don't complain!!

“Everyone has nose hair, Nick, it’s normal.”

“But I have nose hair see…” (Nick demonstrates a finger and a turned up nose in my direction. If he wasn’t my son I would have to say Ewww, here….)

“Yes, you have nice nose hair, Nick!”

“I don’t have to cut it?”

“NO, see I have it too.”

“Only men who get really old have long nose hair?”

“Yes.” (If I were to guess, he is talking about his late great-grandfather who died over 5 years ago … and was 93 and had grey nose hair…and, apparently, "problematic" nose hair, too!)

“And they have to cut it?”

"Sometimes." (Oh, no, was that a concrete enough answer?? Try that again…) “Yes, they have to cut it if it gets long…” (I can’t believe I’m having this conversation…I will crack a beer now… You can crack a beer now, too, if you want, I won't blame you..)

“Why do we have nose hair?”

So we looked up all of the functions of --- nose hair --- (interesting! read here for your nose hair reading enjoyment, too!! It's only fair!!)

“Okay!”

What! Satisfied? Wow. No obsessing for hours about nose hair, or chest hair, or hair growing in odd and “all” places…. But I just cracked a beer and am ready!!
Oh wait, he’s coming back…

“Should I shave my legs like you do, Mom?”

“Absolutely NOT!”

“Only girls?"

“Yes, only women shave their legs…”

And he was off...
That was it. Nice and easy. And he’s satisfied…

But what's he shaving!!!??? Do YOU want to ask??

Getting older; getting wiser...

Nick was at his usual obsessive "talks" of not wanting to grow up. It started off the same:

“My art teacher keeps saying that I'm tall; and said she can’t believe I’m in the 8th grade!”
“All teachers say that, Nick.”
“Yeah! You know I don’t want to grow up!!”
“I know.”
"And you KNOW I don’t want to go to high school!!"
“I know.”
“Why do the stupid teachers tell me that I’m big? I HATE that!!
“I know, but most teachers think that you like to hear that.”
"Well I don’t! (with a demonstrated fist in the air) I HATE THOSE STUPID TEACHERS, I'M GOING TO PUNCH THEM!”
“Nick, the teacher doesn’t know you don’t like to hear that; you’ll have to tell her next time, that’s all.”
“Yeah, well you know I don’t want to grow up and be older!”
“I know!”
“But it’s a good thing too?”
“Yes, it’s a very good thing…”
“I can do more things, like watch rated R movies?”
“Yup, older kids can watch whatever they want…”
“It’s boring to be little all the time?”
“It sure is; being older you can watch and do whatever you want…”
Big smile as he bounced out of the room and down the hall …

In case you didn’t catch the drift of what happened in our conversation, let me paraphrase: Nick introduced why he was mad; then his rage climaxed; then he gently talked himself out of it with the same content used to "settle the problem" in previous similar conversations… I had very little to do with it!! Remarkable!!

It’s getting easier now, and he’s memorizing and using points of conversations that help him feel better… I can just sit back and take the ride…YAHOO!! Or at least I could, this time. But it was wonderful to listen and note his progress!? No temper tantrum. No crazy talk. (Um, trust me, the previous outburst wasn't the worst!) He’s definitely growing up—physically and emotionally… And I’m so proud of him!

All I really have to say is Ahhh--my work here is done!! (well, kinda!!!)

And yeah, but… um… he will always be my little boy, Ubaboo, though! Right?? That’s U-ba-boo. It's love talk in native Mama, and it’s one of many, many nicknames that I have for him! And, Yes, just so you know--I do beat the record of "the most nicknames given to ones children," (if there is such a record) and I can prove it, too!! ;)

Consolation of raising a special child--or is it?

Meghan still loves Barney, you know the big purple dinosaur… although I've noticed that the show has new kids from when she used to watch it--years ago, and as I’m listening to it right now from down the hall, I hear a new Barney voice as well. Oh, nothing stays the same--well almost nothing, but Meghan couldn’t care less, she’s jumping around to Barney and the music as she did when she was still a baby sitting in her walker--just bouncing around with the same big smile on her face. Even though she’s now 13, it’s still cute as hell to hear and watch. A child who can do more for herself than she could as a baby, and learning math and spelling, and long since has learned to write her name, still finds Barney a great joy.

Every time I see moments like these, from either one of my kids, I can’t help thinking that these are the moments that mothers (parents) of typical kids can’t relate to or identify with—among other things; it’s kind of like a weird consolation to having a child with autism and other developmental disabilities; that there is a piece of them, an innocence that may never mature—and likewise, child-like behaviors that a parent will never tire of; but, also, a fine, fine line of crossing over to a damnable offense, and an unsettling future.