Waiting On My Thirty Pieces Of Silver

Posted by Leslie, Daniel's Mom.

Ante-script: My mother has early onset dementia. She is not yet 70 years old and her deterioration is fast, quiet, harsh, and ceaseless. Suicide is very rare among patients with this type of dementia (mostly because they haven’t the ability to plan and process the act) but we have a strong family history—her own father, in fact. Today my father took a gun out of her hand but I can't speak to how or why it was there. I am not there. I can’t be there. I am far away with three children—one is Daniel, my little piece of God. My sister is there, but for reasons never given, she wants nothing from me—I “breeze in” for visits. (Anybody else “breeze” anywhere with a special needs kid? Did I miss that workshop?) Anyway, this piece is almost a year old (2/09)—she visited us back then with the fully disclosed understanding that I would submit my observations to her doctor. Truly, as much as mothers watch our babies change in a year, so has this daughter watched her mother change, only in a backwards dying way. I will need to write on this again, so background information seemed only fair enough to offer.

I submitted my super (and completely un-) secret documentation of mom's visit to her doctor as directed. Or, rather, I emailed it to my dad and he submitted it because I just couldn't send all that crap directly to a stranger.

You see, I told on my mother. Laid out her secrets, one by one, day by day. I kissed her on both cheeks and now they will surely come for her.

It would appear that my mother is only able to function as a result of my father's constant vigilance and well-honed sense of I-Know-What's-Rightiness. It would appear that way because without my father, she is just simply un-able. Unable to what? Well, it's all right there in the document, and frankly, you should probably be on the lookout for a copy because my father is forwarding it around like one of those 'This is Cute' emails. And this, this horrid thing that is scraping my mother away from the inside out, is not cute at all.
She's been gone a week today and my anger is becoming soft and grief-y. Well, you would be angry too (maybe) if you had to hide food and tape containers shut and guard your kids' snacks and wonder why the autistic kid keeps bringing his empty snack bowl back for more crackers(vocab: perseverity/eating disorder--elderly onset) and double check the doors and gates left open and listen to endless lies (vocab: confabulation) and accusations that your Daniel stole her watch. And you would especially maybe be mad if you, somewhere in the back of your head, thought that When Mama Comes It Will Get Better. It was not better. It was her making kids cry at the twins’ birthday party because she wanted to Huuuuuuuug them. Like a very scary Grandma Clown. It was her ignoring her beautiful grandchildren unless they were packing graham crackers (vocab: apathy). It was her describing her father's death (suicide by gunshot, btw) to your children in lurid detail while you did everything but gag her to stop it (vocab: comportment and insight, executive skills). God save me, it was her wanting to pray over Daniel so that he might be healed. Healed. (See prev. entries regarding how he's glorious and I am a mess) I could not bear for Daniel to hear what she might say during this over-praying thing(No vocab for that, but boy, it pissed me off something fierce). It was her no longer able call a light a light or a bowl a bowl (vocab: agnosia).

It was her no long able to be her. I know that. I do

And here's the thing: For all that I did what was asked of me, for all that I checked and double checked and worded and reworded to drain every last drop of drama from it, for all that I swear up and down before you and God that yes, it sounds crazy, but yes, it did all happen, and finally for all that I only did it so that she might be treated and thus be Grandma, for all that, I ratted her out. Betrayed her. She is livid and bewildered (when she’s not talking about what a great visit we had). Her doctor is, as my dad says, "pretty shaken." Great. Just Great. I would like to speak to a manager please. Surely, there is someone in charge.

And also, can I get directions to the nearest Potter's Field on Mapquest?

But you must understand, I knew her when she was. When she was giving me her wedding dress as my own. When she was giving my biggest boy his first bath because I was bloody terrified of that red wailing wiggler. When she assured me that "twins are a good thing" and "we'll get through it." When she called me at the NICU when Fuzzy was intubated (5 years ago today). When she cooked and cleaned and ironed and yelled at me to "keep nursing and they'll be okay." All of these years before the first shadow and pall of autism—The mother of all “I want my mommy” screams. All this before that. And these, you see, are just the tip of the was's. Just the ones out in front in this one tiny bit of scribble. There are so many--God, how I do wish that had been my task, handling the was's and not the is's. Because then you would laugh and nod and think to yourself, "Oh, Daniel’s Mama’s mama, she was something else, that is for sure."

And she was.

Yes-Mom

Posted by Anonymous.

I wonder if my entire relationship with my son has been based on my saying yes to everything.

He's 17, a high school senior, successful student and generally a good guy, except I learned he's not so nice and we're not so close when I say no. When he was 9, he was diagnosed as having an Autism Spectrum Disorder, Asperger's, but was "highly functioning" which meant that he was intelligent, oppositional, argumentative, sweet, loving and exhausting to raise. We sought all kinds of social and occupational therapy for him in order to help him develop the social skills he did not intuitively have. We indulged him when he found an interest in the video arcade game, Dance Dance Revolution, and we drove him to tournaments up and down the East Coast just like other parents drive their kids all over the place when they are on travelling soccer teams. He formed friendships, built confidence, and figured out how to deal with his quirks. He became popular. His dad and I indulged him by taking him on these trips to visit his friends and to participate in DDR tournaments. We permitted him to sleep over at friends' houses in the city where the tournament was held. We hung out in the town and got a hotel room, so we could be close by.

This started when he was 13. As he got older, he told us there was drinking sometimes but he did not participate. Then last New Year's we let him go to North Carolina with a friend, without us, to visit friends. Yes, there was drinking and yes, he drank. He concluded that because we allowed him to go, we approved of his drinking. Then over the summer while his father and I were on vacation, he begged us to stay home and we let him. His response was to have his friends over for a party, with alcohol, purchased with the spending money we left for him.

Since then we have had many conversations about drinking. He tells us that we're punishing him for being honest. We tell him that we worry about him making bad choices. Now, he asked to go away with friends to a New Year's party this year out of state, and we said no. He's angry and is acting out. He says that he's much more honest with us than his friends are, and that we need to trust him to make good decisions, since he is going to college next year and will be on his own. We tell him that there are so many bad things that could happen, like getting into a car accident or having a run in with the police and getting charged with underage drinking. We won't be anywhere nearby to help him if there is a problem. He said he's not handling his anger better because we have modeled bad behavior when we're angry. He says we're being inconsistent and arbitrary. He's saying whatever comes to mind.

He's being so unkind and so impolite that I don't recognize this rude person. Or rather, I see him clearly for the first time. I've been far too worried about being his friend and not being his parent. I did not think that is what I was doing but now I see it all more clearly. And it's too late to change it. He's leaving home in less than a year. He's 17 -- a know it all and barely listens to me. He's grown up thinking that we'll always say yes and he's hardly ever heard us say no. I thought I was teaching him and I see that by indulging him, I failed him. It feels like our relationship is a sham. We are not close because he loves me; we're close because I always said yes.

A Little Piece Of God

Posted by Anonymous.

I have an autistic son who is truly a bit of God broken off and fallen to this earth. I am fortunate in a a million ways that he is oh... let's say autism-lite. He has none of the most challenging behavioral and cognitive elements of the disorder and his therapy is moving faster than anyone could have imagined. I am in no way brave about this, and his diagnosis did very nearly turn me to dust, but recently someone asked that I write a letter to her friend, a stranger, who is struggling with her daughter's recent diagnosis. So I gave it my best shot.

This diagnosis is a pointing finger and nothing more. And now it’s my turn to whisper the important words--words that flicker just brightly enough to keep you from falling the whole hard way down: Your beautiful child remains your beautiful child, regardless of where a finger points. Mothers of auties pass those words down to new mothers of auties like some families pass down silver, and it may well be that this one act and these few words are the single speck of autism that we mothers hold in common.

Autism is so many things, so many different ways of being. People will ask you “what is autism?” Believe me, they’ll ask you all sorts of things, but when they ask this particular question, they may as well ask, “what is skin?” How do you answer? How can you? But since no mother begins this trip with answers and since you cannot give what you don’t yet have, leave it, just leave it. . Also, it’s very important right now that you pack lightly, so you must leave other people’s stuff behind. This is your trip and that pointing finger is where you start.

Take this road through whatever terrain you must--anger, grief, frustration--and know that you will come out the other side a changed and stronger mother. Go ahead and take the long road with all the hills and muddy spots. Stop where you feel the need, think a lot about turning around, and understand that you will always bitch about why you have to do all the damned driving. But you will drive and drive. And then drive some more. You will keep moving forward, I promise.

Claim your place now among like-minded mothers and know that we are tough. We will stand with you shoulder-to-shoulder, stretch mark- to-stretch mark because we have all done the drive, in our own way, at our own speed with our own stretch of muddy spots.

My autie is a million kinds of magic to me. Just as he had no words for the first five-ish years of his life, nor do I have words to explain our bond. His everyday obstacles show up on time every day, but they loom only as large as we allow. So often, too often, we show off those obstacles—we set them apart and make absolutely certain that we can say, “That’s my kid there, and wow, will you just look at the size of his obstacles ? They are RIGHT THERE and THEY ARE HUGE.”
Let me be very clear now, that those same obstacles have no power over the magic, not the least little bit. Say that outloud to yourself right now. Good. This child sits closest to my heart and I can tell you that even in his worst moments, I can see tiny bits of my best self. He is unbridled joy. He has a lightness that comes in quite handy during the darks. And while my chaos is just boring mommy chaos, his chaos is—well, he’s often quite glorious in his chaos. My own road is occasionally strewn with his gifts of glory wrapped in sticky chaos Now, understand that these gifts are rare and precious, mostly unexpected and sometimes quite sticky. Some days you will have to look long and hard to find even the dullest one. Some days you’ll give up looking altogether. Again, please know that giving up on today can never, ever forfeit the gifts scheduled for tomorrow. Keep looking. You’ll see.

Daniel’s diagnosis shattered me like a rock hitting glass--a big ugly hard thing hitting a not very sturdy at all thing. We sat in that tiny room with the tiny chairs and filled out those very not-tiny-at-all pages of parent questionnaires and I cried. The whole time. Long pages. Lots of crying.

Not a good day, to be sure, but one that you’ve now survived. You remember the tiny room with those tiny chairs, and you surely recall filling out the stack of parent questionnaires. You might also recall that your answers were often limited to three choices: Often, Sometimes and Not At All. So do you bend your beautiful child to fit those tight little circles? Oh, you know that answer already. And when you worry that your daughter's diagnosis might change how you see her, who she is, and who she might become, that answer fits quite nicely into one of those circles.

That answer is Not At All.

How Do I Help Him?

Posted by Anonymous.


I think my brother has Asperger Syndrome (AS) and my mother is paying the price.

I am 28 and my twin brothers are 25 years old. One of the twins is a rather socially-awkward kid. He was just like any other kid until he turned 16 or 17. Now well into adulthood (25 years old) it is becoming harder and harder for my parents to interact with him. Mainly because:

*He always misunderstands people (99% of time)
*He is always politically incorrect (or rude) because he wants to be honest
*Although he is finishing university, he has had difficulty with writing exams
*He has never maintained a job or successfully passed an interview
*He is not aware of his appearance (he doesn’t shave often)
*He never dresses appropriately (wears a T-shirt at a wedding)
*He cannot maintain friendships
*He can never get a date with a girl (as a result, sexually frustrated)
*Often he uses language expressions in the wrong way (wrong situation)
*Sometimes he laughs nervously, twitches his eyes or moves his fingers on the table in a repeated rocking motion.
*He remembers strange details of things, even after 20 years
*He repeats exact dialogues from some shows like Dr. Phil to prove an irrelevant point.


So, I am diagnosing him with AS, despite the fact that no doctor ever took the time to fully examine his situation!

The problem is not just AS. Many of you how know psychology, you that the “middle child” often suffers from paranoia that he has been short-changed in the family. Many middle children are sometime in their lifetime jealous of their siblings and blame their parents for their failures. Now add AS to the “middle child” factor and you will get a child that might some day kill his parents or siblings in cold blood!

The good news is that my brother is not violent, otherwise we would all be dead by now because he hates our guts! But my mom gets into a fight with him at least once a day when he misinterprets everything and everyone!

He doesn’t think there is anything wrong with him, but “the whole world needs therapy”. Anything that comes out of his mouth is non-sense jealous rage and hatred toward family members, friends and any stranger.

He believes that my parents never loved him. He believes people just want to mock him all the time or everyone is out there to get him and that’s why he can’t pass a job interview.

He has a special way of making everyone mad and my mom cry. Sometimes I think he will give my father a heart attack. My parents love him to death and they know that he may never fully grow up and despite his degree in Engineering, they may have to financially support him for the rest of his life.

But I worry. When I was 23, I was raped by a guy who had almost the same problem. He was sexually frustrated and didn’t understand the meaning of “I don’t want to have sex with you.” I never told my family what happened, because I should have known better.

My question is “how do we get him help, when he believes he is not the one with the problem?”.

Because of his condition, he is not aware of his awkwardness and it is getting worse day by day. At the age of 25, it is not cute anymore when he dresses himself funny or says the wrong thing all the time! I think he needs to get some help before he gets violent and either rapes a girl (because she wouldn’t go out with him) or seriously hurts a family member.

The Leap

Posted by Aliki.



I’m posting here because I so badly want to write some things down and can’t on my own blog yet. Perhaps one day I will, but for now I welcome having the opportunity to post this on the back porch, as it were, and thus relieve a little the need I have to write about this and perhaps share it with my blogging friends who know me.

********

My son swam a little for the first time yesterday. He is almost seven and has been holding back for over three years—taking little tentative “steps” towards swimming; afraid but ashamed of his own fear. The water has tormented him—the kids dancing and diving in the deep end have taunted him. But yesterday he swam a little. As I watched I saw that unmistakably his feet left the bottom of the pool and I saw two slender ankles kick out against the water—briefly--but kick out they did, it all the same.

Mama I swam! He shouted, his gap-toothed grin shining from below his blue goggles. I swam!

On the walk home from the pool he asked what day it was.

It’s the 4th of June, we told him.

The 4th of June! He exclaimed. We need to mark this down as the day I learned to swim!

I did mark it down, and in my mind I made another mark. For yesterday was also the day I spoke for over 30 minutes on the telephone with his school psychologist and learned that the head of the autism team had diagnosed him with Asperger’s Syndrome—a form of high-functioning autism.

For the past year we had suspected as much, but had shied away from going down the testing road. We were afraid of labeling him; of causing more harm by perhaps compartmentalizing him into a category that could shape and define him for perhaps the rest of his life. But because of how at times desperately difficult things have been this year—particularly this past winter, we felt suddenly out of our depths. His behaviors were interfering with school—not academically, so much, although we feel is capable of much more than he is able to produce—but socially. In other words, the social side of school has become so difficult and almost unbearable for him at times that he’s developed many disruptive and upsetting behaviors to combat this and is often in a heightened state of stress and anxiety. It has been sad to see and very, very difficult.

I’m not sure what I’m expected to feel about all this. Nothing has changed with this official diagnosis yet, in a subtle way, much has. I also have this strange feeling of having done something wrong in going through with all the evaluations. Perhaps we should have left it alone, kept our fingers crossed, gritted our teeth and hoped for the best. I feel overwhelmed.

But I want the best for my son—not in terms of material success, good jobs, or even many friends. I want his days to be better—I want him to have more happy moments than painfully anxious ones. I want him to go to sleep at night and not wake up in terror; I want him to not feel so burdened by every little thing, with the need to control most aspects of his life to the point that it is physically destructive to his own health.


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

Yesterday at the pool I watched my 6 1/2year old son jump for the first time from the side of the pool and into the water. His body tensed—held back—but he gathered himself and tumbled into the water, popping up seconds later, wet and triumphant. It’s taken him years to build up the courage to do this; I watched him and thought about how it might always take him years to finally get the courage to do what most kids—even his sister—might do unhesitatingly, quickly and over and over again. I don’t want to keep him beside me always—that would sadden me. I want to see him take the leaps, feel the surge of confidence, look a stranger square in the eye; and—most importantly—go through his day and not feel that the world is pressing uncontrollably in on him. Life itself will not be difficult for him; it is the people in the world who will present problems for him; it is the mess of society—a society that moves too quickly and demands too much—that will hold him back, push him further into his cocoon, overwhelm him constantly.

I wish all days for him from here on out could be as uncomplicated as a day by the pool; the water clear and shining, the moment only about the leap, and the happy plunge into the shallows.