Tuesday, October 13, 2009

Recreating myself

My friend Scott just updated his blog - http://littleteaboyseverywhere.blogspot.com/2009/10/butterfly-house.html. If you're not reading his blog, you should. Scott is a brilliant writer, he never ceases to amaze me with his insight and the beauty of his prose.

Reading his blog got me thinking, about where I've been emotionally over the past year, about the things that what I've gone through have caused me to question, about how I've had to re-evaluate so much of what I thought my future was going to be, and about the effect that all of this has had on me as a person. The timing of all of this seems very appropriate to me. The days are getting shorter, the air is getting cooler, and I'm feeling the desire to hunker down, snug up my nest, and settle in for the dark half of the year.

This is normally the time of year when I become more introspective, more still. That's been happening slowly over the last few weeks, and with it, I've started to take a really hard look at the impact of the past 9 months.

In a way, it feels like I've gone through a re-birthing of myself. The person I thought I was back in January doesn't really exist any more. Back then, if you'd asked me what I was, I would have said a mother and wife. If you'd asked me where I saw myself in 10 years, I would have included my husband in any description of that potential future. But that potential future, that role of wife, of partner doesn't exist any more, and I've spent the past nine months going through the process of re-creating myself.

It's been a painfull process, at times almost unbearably so. There were times where I thought I couldn't go any further, and that for the rest of my life I'd remain this fragile, unformed, unfinished lump, with no idea of who I was any more. I had invested so much of myself into the marriage, into the relationship that I'd started to define most of who I was in terms of how it connected me to the husband.

This spring and summer have been about letting go of that. It's been the hardest thing I've ever done in my life.

But I think I've finally got past the labor pains of recreating my life. I can look ahead now, and see my future as just mine. Not as part of a pair, not as something empty and lonely, not as consumed by being a mother to an autistic child and nothing beyond that. I can see my future as a clear path, with dozens of smaller paths stretching off of it, each one leading to someplace new and wonderful.

So I think that for me, this half of the year is going to be about finishing that process. I've spent large amounts of time thinking about the patterns of relationships I've had. Honestly, this is the longest period in my adult life that I've gone without having a boyfriend or husband, and I think that's actually been a really healthy thing for me. (Minus the sexual frustration!). Not that I'm dependant on a man to take care of me, I'm more than capable of taking care of myself.

I think that when I fall in love with someone, I tend to justify their behavior, make excuses for them, and want to believe the best in them, even when there are red flags popping up all over the place. I have a bit of a rescuer complex, and it's taken me years to realize this about myself. Part of finishing up the process that I'm going through is going to involve examining that aspect of myself, and learning how NOT to let that blind me to the things I need to be aware of. It's an important step for me, one that it took me 3 marriages to realize I needed to make.

That being said, I really feel like this time, I'm doing things the healthy way. I'm not diving into a new relationship to distract me from feeling the pain of the loss of the last one. I'm not ignoring the hurt and the anger, I'm actually processing it, evaluating it and growing from it. I'm not throwing myself into work/school/kids to keep myself busy to the point of exhaustion.

I'm taking time to actually be in the moment. To stop, breath, feel. To take the time to learn what it is I need to carry away from this experience, and what I need to shed and leave behind me. It's something I've never done after a relationship before, probably something I've needed to do for years.

I'm finally hearing the message, and doing the work, and it's starting to feel really good.

Sunday, September 20, 2009

Autistic Meltdown 101

Most of you have heard me use the term "meltdown" to describe what happens when Wyatt becomes overstimulated, but it just occurred to me that I've never really explained what a meltdown is like. I know the general assumption is that it's comparable to a tantrum, and in some ways it is, but there are also significant differences. So, to give you some insight into what behavior issues are like to deal with for the parent of a child with autism, I'm going to do something I haven't done before. I'm going to try and describe what goes on when Wyatt has a meltdown.

To really understand this, you have to understand that for autistic people, the normal filters don't work properly. Their senses are overly acute, with the most severely autistic it's most or all of the senses, for Wyatt it's primarily his hearing. Imagine being in a crowded mall around the holidays - music blaring, bright colors everywhere, lights flashing, smells coming at you from every direction, noise, being jostled feeling encroached upon by touch, scent, sound and sights. It's overwhelming, right? Now imagine living with this every waking moment of every day. This is what the world is like for someone with autism.

Part of the reason that autistics shut down is as a coping mechanism to deal with the constant sensory assault. With Wyatt, I've spent years gradually increasing his exposure to sensory input, in order to desensitize him to it, and it's worked pretty well. There are times though when he's getting more input than he can handle, and that's when the meltdowns occur.

When Wy has a meltdown, he becomes very anxious and agitated. he'll start stimming - hand flapping, walking in circles, covering his ears, sometimes he'll rock. He gets a very worried expression on his face, his voice gets higher and louder, his arm movements get very spastic, and his speech changes.

Wyatt's made amazing progress with his speech, but when he's in meltdown mode, he regresses to where he was about 3 years ago. He'll give out occasional original sentences, but most of his speech will be lines repeated verbatim from movies, cartoons or video games. The thing is, even though he's repeating dialogue, he uses phrases that express what he's feeling at the moment. He'll say things like "It's all my fault, I'm broken, somethings wrong with me, I'm a monster, I don't deserve to have friends".

It's heartbreaking to me, to hear this beautiful little boy say these things about himself. It's also hard to see how other people react to him when he gets like this. I love my mother dearly, and she adores Wyatt, but when he's having a meltdown, she just has no patience for him. My father does better with him, my father is far more patient by nature. Other people, people that don't know him will stare, yell at him, tell me he needs to be punished or spanked. None of which is going to help.

What I've found works best with him, is to remove him from the situation, take him somewhere quiet, and just wait it out. There's no point trying to reason with him, because it's just going to prolong things. So I sit, I hug him if he'll let me, rock him if he can stay still that long, and just try to reassure him that it's ok, and that he'll calm down soon. Sometimes I can distract him, but more often than not it's a waiting game. When he's calmed down enough to talk, we'll talk about what happened, what triggered the episode, and try and come up with ways that he can cope better next time. Sometimes it works, sometimes it'll just set him off again.

What I DON'T do, is let him use the meltdown as a way to get off the hook for bad behavior. If he did or said something he needs to apologize for, once he's calmed, I make him apologize. His autism is part of who he is, but it's not a free pass for him to act like a brat, and I make sure he knows this. Just because he's autistic doesn't mean he doesn't have to be polite, use good manners, or behave himself in public.

Usually it takes him about 45 min to go from full blown meltdown, to crying, to calming down and then back to himself. That may sound like a long time to you, but believe me, it's better than the 2-3 hours it was 6 years ago, many of which included him getting so wound up he threw up. Back then, meltdowns used to happen almost once a day. Now it's maybe once or twice a month, sometimes longer.

I know once he hits early puberty, there may very well be an increase in the meltdowns, but I'm hoping that by then, he'll have internalized enough coping mechanisms to be able to recognize when one is coming, and stop it early.

So that was your lesson in meltdown behavior. Any questions?

OMG Hi! - You popped into my thoughts today kiddo.

Just a little over 2 years ago, a very sweet, very special friend of mine passed away, and he's been on my mind a lot the past few days.

Maybe it's the looming specter of Wyatt's impending adolescence that's made me think about him, like Wyatt he was also on the autism spectrum. He had Aspergers Syndrome, a high functioning form of autism.

2 years from now, Wyatt will be starting Jr High School. It's a frightening thought for me, I know what it's like to be different, to not fit in, and I remember very vividly just how cruel children can be to someone who doesn't fit into the mainstream. Wy knows he's different, to a degree, but he hasn't had to deal too much with teasing because he's in a specialized classroom for the majority of the school day. He's been mainstreaming over the last couple of years, and he's doing well enough that his teacher and I have agreed to increase the amount of time he spends in a typical 4th grade class, but it's a mixed blessing. On one hand I'm delighted that he's able to keep up academically, that he's working almost completely on grade level. On the other hand, I worry about the day he comes home crying because someone looking to climb further up the playground social ladder called him a retard.

A friend of mine told me once that our job as parents is to teach our children how to live in this world without us, and that it starts the moment they cut the cord.

Lesson 1, breathe on your own.

Everything I've done with Wyatt, from the day he was diagnosed with a developmental delay, has been working towards that end. The sign language, the speech therapy, the play therapy, social interaction, tactile and auditory desensitization, the countless other therapies and behavior modification tools we've brought into out arsenal, all aimed at helping him learn to function as independently as he possibly can.

I'm very hopeful for his future. I have no reason to think that he won't go to college, have a job, and eventually live on his own. But the next 10 years are going to as hard, if not harder than his toddler hood was, for both of us.

Maybe that's why my friend has been on my mind so much lately. The suicide rate for teens with Aspergers and High Functioning Autism is believed to be much higher than in typically developing teens, unfortunately I haven't been able to find a solid figure. But it makes sense. Adolescence is difficult enough, with the growth spurts and raging hormones. Add in the social difficulties of Autism- the inability to read social cues, difficulty carrying on a "normal" conversation, the sensory overload, the jerks and hand flapping, and it's easy to see why so many autistic teens are on medication for depression and anxiety.

Right now, I guess all I can do is to continue working with Wy on social skills, and make sure he knows every day that he's loved and accepted for exactly who he is. Hopefully I've given him what he needs in terms of self esteem, to carry him through the rough waters ahead.

So, as a reminder to myself, and in memory of Chris, I'm reposting the blog I wrote shortly after Chris died.

Wednesday, August 29, 2007
For Christopher
My heart is aching right now for a mother in Canada. I've never met her, I don't even know her name, but I'm crying for her just the same.

I knew her son, first from the Vote For The Worst message board, then from another site that we were both on. Last night this sweet, funny, and very sad young man took his life. He was 16.

I'm devastated by the loss of a boy that I thought of like a nephew. I'm sad that such a great kid thought so little of himself that he felt the world would be better off without him. I'm also so angry at him for doing this to himself.

I think about my own son who is starting college next week, and how I'll be spending this weekend helping him move into his dorm. I think about all the expense, the drive up to NY, the cost of tuition and books, worrying about him being on his own.

Then I think about this boys mother, who will never experience any of this with her son. I think about how empty her house must feel. I can see her closing the door to the bedroom where he died because to look in there is just to painful. I picture her holding his first grade picture in her hands, trying to understand what happened to her beautiful little boy. I imagine her pouring over every second of the past few days, searching for clues, trying to understand, desperately wanting to turn back the clock to the second before he decided to end his brief life so she can wrap him in her arms and tell him how very precious he is to her.

My heart is aching for a mother in Canada right now.

So, in honor of that mother, I will hold both of my boys close to my heart. I will whisper in their ear, and tell them how precious they are to me.

Wyatt, Target and Pretty Women

Wyatt got money from Nana and Grandpa for his birthday, and it's been burning a hole in his pocket for days now. When I said that to him he checked his pants and said "But my pants aren't on fire Mom.", so I had to explain to him what that meant! (Gotta love that autistic literal interpretation!)

I had taken him to the Target by our house to pick out what he wanted,and he chose a Lego City Camper set, which he put together all by himself. He sat down with the instruction book, figured out each step, and assembled the camper perfectly, which was really impressive for him. Usually he has a hard time staying focused on a task, so I was really proud of him. (I see LOTS more Lego sets in his future).

The other thing he wanted was a very specific fire truck (because I guess the 8 that he already has just aren't quite enough for him), so we went to the Target in Kernersville last night, before I dropped him off at my folks house.

Well, Saturday at the Kernersville Target is apparently Pretty Teenage Girl day, so my little boy was in hog heaven! He picked out his truck, and then he cruised the store like a newly divorced 40 year old man at a singles bar. He went from girl to girl, with his pick up lines at the ready:

"Hi, what's your name?"
(as he grabs her hand and starts walking with her)

"I like your name, mine's Wyatt, this is my new Firetruck, it's my birthday present"
(as he gazes up adoringly at her)

"You're really pretty, can I have a hug"
(as he also puckers up and kisses her cheek)

"Will you be my girlfriend? I'm going to join the Naked Brothers Band and move to NY and be a rock star"
(as he starts scouting out the next conquest)

"I have to go with my Mom now, thanks for being my girlfriend"
(as he moves on to the next pretty girl)

Oh, I'm having High School nightmares already, and he's barely even 9!!!!

Friday, September 11, 2009


This past friday was our Path Of The Moon Summer Ceilidh, which was put together by the lovely RavenHarte. She worked her BUTT off on this, pulled together some amazing talent, and it turned out to be our most successful fundraiser this year, and may very well be the most successful one we've ever had.

It was an amazing night!

I was a little anxious about bringing Wyatt with me. He gets overstimulated easily, and I really thought with all the people, and the music, that we'd end up having to make a hasty exit.

But I couldn't have been more wrong.

Wyatt LOVED it, he enjoyed all the musical acts (even though he kept his fingers firmly planted in his ears), but his very favorite thing of the night were the lovely ladies of Torque, the wonderful belly dancing troupe.

Wy definitely has a type, he loves women with long dark hair, and especially exotic looking women, so belly dancers are right up his alley. He got one look at these ladies, and was over to them like a SHOT, holding their hands, hugging them, inviting them back to Nana's house to dance for him, and telling all four of them that he wanted to marry them!

He especially loved Sashame, and parked himself right between she and Heather for most of the rest of the evening. I had bought him a clip on flower from Tiger RoxXx, and he asked Sashame if she liked his flower. She told him it was gorgeous and he asked her "Do you think I'M gorgeous?"

Of course she did, I mean have you seen my kid? Who could resist him?

Sashame and the ladies were so sweet with him, she even made it a point to go out and give him a kiss goodbye before we left. As we were driving over to my parents house, Wy let out a long sigh, looked at me with his beautiful hazel eyes and said "Mommy, I'm in loooooooove".

I asked who he was in love with and he said "The belly dancers" I asked which one and he said "All of them but I love Sashame best".

When I got over to my parents house the next day, my father was hysterical. He said all Wyatt talked about all day was how he was going to marry the belly dancers, that they were so beautiful and that he was in love with them. My mother thought it was just adorable.

Apparently I'm an Asshole Magnet

I so hate having to deal with Wyatts father. As Cindi so aptly put it, he's a tool.

I've been having my yearly school district battle, and after talking to the director of the Exceptional Childrens programs, I'm going to have Wyatt transfer to Walkertown Elementary. The Principal there is much more receptive to EC Kids, having been an EC teacher, the programs is at the same level as the one he attended last year, and Walkertown is closer to my parents, which will make it easier for them to help me out on days that I have late classes.

I've had Wy's school records and his Individual Education Plan transferred over, and I'm going in tomorrow to fill out the contact paperwork, and set up school bus transportation for him. There's also an open house on the 19th, where Wyatt will be able to come see his classroom, meet his classmates and teacher, and get to look around the school before starting there. So I've got everything in order for him.

I call his father today, to make sure that he's up to speed on all of this. He knew Wy was going to transfer, and in actuality, this makes things easier for him, because Walkertown is closer to where he lives. I told him everything that was set up for Wyatt, and he says to me - "You're not going to drive him to school any more, you're going to make him ride the bus?".

Like I had told him I was going to push bamboo shoots under Wyatts nails.

I said "Yes John, he'll be 9 next month, I don't see any reason why he can't ride the schoolbus." He's ridden the bus before, in preschool and in kindergarten and first grade. The only reason he hasn't ridden the past 2 years was that he was attending Jefferson as a transfer student, which meant that the school district wouldn't provide bus transportation.

Then the tool tells me "Well, I'm going to have to go over there and make sure that everything is acceptable." I asked him if he really thought I would put Wyatt into an unacceptable school, and he said "Well I don't know Peg, you've had a lot of changes in your life lately, I just want to make sure Wyatt's getting the attention he needs"

If I could have crawled through the phone and choked the fucker I would have.

He seems to think that because Tim and I aren't together any more, that gives him the right to make veiled accusations that I'm neglecting Wyatt, or that somehow my husbands infidelity and abandonment of his family is a reflection on my parenting skills. He conveniently forgets that he ran out on his wife and son when Wyatt was 2, in fact he did it on the day we were supposed to have a 2nd birthday party for Wyatt. He also seems to conveniently forget that he's had a domestic violence protective order filed against him for verbally abusing me, backing me up against a wall, pulling his fist back and threatening to hit me in front of our 2 year old son.

The other thing that he seems to forget is that I have primary custody of Wyatt, that I have made every decision regarding Wyatts autism diagnosis, therapies, treatments and education, with virtually no input from him. The few times that he HAS attempted to make any kind of suggestions he's suggested therapies that I used with Wyatt 3-4 years earlier, and Wy has long outgrown. He wanted Wyatt to have chelation and hyperbaric O2 therapy done - treatments intended to remove heavy metals from vaccines that supposedly cause autism. I had to remind him that the vaccines Wyatt received were thimerisol (mercury based preservative) free, that there have been no credible scientific studies proving that chelation has any effect whatsoever on autistic children, and that chelation is highly experimental and has a high incidence of potentially dangerous side effects.

I've gone out of my way to treat him decently, to include him in every aspect of Wyatts life, to make sure that he's up to date on everything that's going on with Wy, and this is the kind of bullshit I get in return. He's condescending, insulting, and rude every time he comes over to pick Wyatt up. He makes snide little comments like "Has Wyatt eaten today?" or "Is that what he's going to wear?" or "Did you remember to have him do his homework?" He's also threatened twice to take me to court and fight me for custody, claiming he had a lawyer. Both times I told him to go ahead, and he ended up backing down and admitting he didn't have a lawyer after all.

God he's just SUCH an asshole!

Right now he's pissed because I've told him that I need for him to pick up more time with Wyatt, and that if he continues to pay his child support late I'm going to have it garnished from his paycheck. His response to that was to tell me that Wyatt can come live with him every other week and we'll eliminate child support all together.

That's not going to happen. I'm not going to shuttle Wyatt between 2 homes every week, that's too much transition and too much inconsistency for him, it's not in his best interests. He's already had enough major changes in his life this year, I'm not going to force any more on him, that's not fair to him. And honestly, I don't think John is capable of dealing with Wyatt on a full time basis, I don't think he has the stamina or the patience in the long run. I know what his temper is like, he stuffs everything down until he reaches the boiling point, and then explodes over something inconsequential (like, say, a sink full of dirty dishes). He also has bouts of severe depression, which he refuses to get treatment for. He can handle Wy for 1-2 days at a time, or for the occasional week, but raising an autistic child full time is a whole different ball game, and he's not equipped for it.

So, I think maybe it's time for me to verbally smack him down again, put him in his place, and make it crystal clear to him that I will NOT tolerate this bullshit from him. I've gone out of my way to try and keep things on an even keel for Wyatts sake, but I've about reached my limit with this ass monkey.

How To Handle a Tool

No, this is NOT a home improvement note.

Well OK, in a way it is.

The Tool came to pick up Wy for the weekend this morning. Wy slept in, so when Tool got here, Wy was still in his PJ's eating breakfast. I invited him in to sit down, and offered him coffee, which he refused as always, and he stood in the doorway, not looking me in the eye, again as always.

Wy finished his breakfast, and I sent him upstairs to get dressed and told his father " Sit down, We need to have a talk".

I started off by telling him, I know he loves Wy, and that he wants what's best for him, and that I want the same thing too. Then I let him have it - not yelling, not crazed psycho, very calmly and clearly.

I told him that since Tim and I split up, I've seen a change in his attitude towards me, and I don't like it. Told him he's become condescending and rude, and I'm not tolerating it from him. I said that over the last 7 years I've done 90% of the parenting work, and the reason Wyatt functions at the level he does is because of the work I do with him on a daily basis.

His response was "Well I'm his parent too, and I work with him too". I said "What's his Case Managers name? Who was his best friend at camp? How much did camp cost? What's his swimming teachers name? What were his scores on his end of grade testing? What was his IQ score on his last developmental evaluation? When was his last Doctors appointment? What's his favorite TV show? What's the name of the head of Exceptional Chidrens Programs for the school district?"

He couldn't answer any of these questions. So, he got very defensive and started sputtering.

I told him "You made the choice to walk out when Wyatt was 2. You chose not to attend any of his evaluations, or have any kind of active role in his education until he was 6. You chose not to start learning anything about autism until he was 6, and what you have "learned" is all anecdotal and experimental, and has no basis in science, and no credible research to back it up. I've not only spent the last 7 years researching and applying proven therapies, I've also given 2 lectures to the regular teaching staff at Wyatts school on understanding autism, and how to deal with social and behavioral issues with autistic children in a regular classroom setting."

Apparently he wasn't aware of that.

I also told him that we have a valid custody agreement, with a reasonable visitation schedule, one that I have been more than willing to be flexible with, but there was no way that Wyatt was going to shuttle between his apartment and mine every other week, that it was too much transition and too much inconsistency for him.

He said "Agreements can change Peg". I said "How, with you and your imaginary lawyer that you've been threatening me with for the past year? Because I have a REAL lawyer, so if you and the firm of Tinkerbell, Dumbledore and Frodo would like to face off with a former DA who specializes in family court law, you're more than welcome to do so."

Then he got contrite, saying he only wants what's best for Wyatt, and he's worried that my school schedule is going to impact Wyatt. I told him I've spent the last 6 years arranging my schedule around Wyatts, and that I've managed to meet Wyatts needs, work a part time job and maintain a 3.8 GPA, and that if he's so concerned that Wyatt isn't getting enough attention he should make more of an effort to spend time with him. Told him that he's known for almost 7 years that if he wants to come pick Wyatt up for a few hours, take him to the park or the pool all he has to do is call me, but in the past 7 years he's NEVER done that, so his argument that he's concerned about Wy not getting attention doesn't hold water.

By this point Wy was dressed, so I ended the conversation by telling the Tool that if he has concerns about Wyatt, he is to address them to me in a respectful, polite manner, and we will sit down together and discuss them, but I will NOT tolerate any more snide remarks or condescending attitude from him.

He had no response to that, and tried to hustle Wy out the door, and I stopped him and said "I don't let you leave without having Wy give you a hug and kiss, I expect that you show me the same courtesy, especially in my own home."

Then I kissed my boy, and watched his father walk down the driveway with him, looking thoroughly defeated.

What a LOVELY way to start the day!

Blog Archive