Let's just file that away with all the other questions we don't ask in public, okay?

I'm sitting on the couch watching a cartoon with Motormouth. Out of the blue he chuckles and asks "Do you have Autism or something?" Startled, I look at him and say "are you talking to me?" Equally startled, he looks at me and says "no, I was talking to Popeye." "Why would you ask that?" I ask. "Because Popeye talks to himself" he replies.

Huh.

I think the fact that the two of us were startled by the idea that the person sitting next to us would actually talk to us is more of a indication of Autism than talking to yourself, but what do I know?

Don't make me feed him goldfish crackers and unleash him on you.

We've lived here for three years now. That means a lot of things, mostly that G and I are dying to move, but also that the kids are due for eligibility reevaluations at their schools. I wasn't on the ball with Motormouth's school, and let them do the re-eval, and they are wanting to change his eligibility from ASD (Autism Spectrum Disorders) to some stupid 'dual' eligibility (because they don't argue that he has Autism, just not enough). That's another story, though, and I won't bore you with it. I called Monkey's school and told his teacher that I wanted to decline the eligibility re-evaluation (they have to be done every three years to determine placement in Special Education, UNLESS the school and the parents agree that there is no need. I can't imagine them deciding that Monkey doesn't have Autism, so I don't want to give them the chance). She called me back after a week and said that it was okay, so I'm assuming that means the school doesn't question his eligibility either, thank God. She then proceeded to tell me that they would still have to do 'some' testing and observations with him to satisfy the MET requirements, yada yada yada. At this point I'm a little suspicious of everything the district is saying, so interrupt her with the following:

Me: I guess I'm okay with you doing what you need to in order to 'check the box' on the paperwork, but I will need you to inform me in advance what days the testing and observations will be done.

Teacher: oh...sure...I guess we can do that, how much notice are you needing?

Me: at least the day before. I feel that if you are going to be observing and testing him, then you should be getting a true look at Monkey without the supports he has in place for his Autism. The main support piece that we provide at home for him is keeping him on his strict GF/CF diet, which as you know, helps him control his behavior, sit still and focus, among other things- and I feel that we would need to take him off his diet for you to really get a feel for what Monkey's special needs REALLY are....you are probably going to want to get everything done in one day. He's going to be a complete mess (shrieking, flailing, hysterical mess) and so I really don't want to subject him to feeling so out of control longer than absolutely necessary. Okay?

Teacher: um...you know....let me talk to the Social Worker. She knows Monkey pretty well, maybe we don't have to do all that....let me find out what we REALLY need to have for this before we jump into testing...*nervous laugh*.

Me: why don't you do that and get back to me.

Holly Robinson Peete, you should know better

I'm home watching daytime television, which is something I don't normally get to do. I'm watching this new talk show called "The Talk" which from what I can tell is a knock off of the View. I'm interested because it has Holly Robinson Peete on it, who is the mom of a son with Autism, and she is doing this segment about a mom with three boys with Autism. It shows her three sons and they talk about her day to day life and how difficult it is for her sons. Then they show that she is there in the studio, with one of the boys on the spectrum, and this other teenage boy. Turns out this is the older brother, whom was not mentioned at all during the segment. That's not all, but they go on to say that there is another older brother who is also not on the spectrum. Instead of being a mom of three boys with Autism, she is actually a single mom of 5 boys. Okay, I'm with you Holly. Holly then asks the typical teenager how life is for him in this environment, which I thought was nice because the typical kids are generally invisible in a household with special needs siblings. That's when the whole thing comes off the rails. It starts out with the show giving this mom some stuff to help her out, which is what you are expecting to happen. It was all harmless enough, a hospital was going to pay for her kids to get reevaluated, which is an expensive undertaking, so that was cool. A company was going to help her with some financial planning and help her set up a special needs trust...that was cool too. Then Holly starts passing out the iPads. Yes, the iPads are proving to be great for non-verbal kids, and they have really cool specialized Apps for kids with Autism. They might actually help give her non-verbal kids a voice, which is priceless. My problem is that you are throwing those around and everyone is cheering and that poor typical brother gets squat. Then they threw in a shopping spree from Toys R Us differently-abled toy catalog so she can buy whatever she wants for her sons with Autism. Fantastic, I'm sure the other two don't mind getting passed over, AGAIN. Then to top it all off, she then hands the youngest son with Autism a gift basket of toys because 'he likes Nascar'. I just thought it was really thoughtless to shower that mom with gifts for only a few of her children. I'm done complaining now.

What just happened? No really. Explain it to me.

I just watched my husband lay on the floor in the hall outside my son's bedroom door and pass his pajamas back and forth under the door while my son screamed "No pajamas!" followed by "Gimme back my jamas!!" for about 40 minutes. The fact that we really didn't care if he wore pajamas or slept in his jeans was lost on him. He continued to yell that he didn't want to wear pajamas nonstop until he abruptly announced mid-yell that he needed to go to the bathroom. I open his bedroom door to let him out and found him standing at the door, wearing the pajamas (that he is NOT wearing, Mommy!!) and holding all his dirty clothes. He marches to the bathroom, throws his clothes in the hamper, looks at me with red-rimmed puffy eyes and asks for help brushing his teeth.

The Dark Side

I made the mistake of nodding off at my inlaws. I was brought back to reality by hearing Monkey shrieking hysterically in the next room, then G walking through the room with a crying, flailing Monkey in full attack mode. G was tagging out. Which means that I am up. Sort of, because I'm still not quite awake enough to really understand what is going on. Not that it matters. As always, it doesn't matter how we got here, at this point it only matters how we get back. I get Monkey into the spare room and manage to get all of his limbs under control. Sort of. For a second. Wait. A leg got free. How can he bend it like that to kick me? argh. Got it. Whoa there, almost took a head-butt to the chin. That was a rookie mistake. Can't hold his arm like that. Reposition, reposition, reposition. He's screaming that I am hurting him. Am I? Nope...not hanging on too tight anywhere, he can breathe, move a little-Whoops, gave him a little too much room to move and he got away. Start over. Stay calm. stay calm stay calm. Got him. Why are his elbows so pointy???? I can't let you go, even if it breaks my heart to hear you beg me to do just that. I can't. I love you too much. That doesn't even make sense. How can pinning you down as you scream be any kind of love? Even if I'm trying to keep you from getting hurt. Even if I'm doing it as gently as I can. Even if I know deep down that 20 minutes of this is better than 4 hours in the emergency room. This can't be right. I need to get out of here. I can't do this anymore. Mommy needs a time out. Wait Mommy don't go, don't leave me. Don't leave me alone. Clinging to my leg. Let's lay down and take a break. Take a breath. Let's just breathe. Okay. Here we are. Turning it around. Arms and legs a tangled mess. Head on my chest. Shaky, gasping breaths. Calm down, calm down calm down. You can do it. Just breathe, breathe breathe. His heartbeat on my stomach, mine in his ear, they become one and slow down. breathe, breathe breathe. The monster leaves, Monkey returns. He cries. Hopeless tears for things he can't change. Connection so intense, painfully sharp. He rests. He breathes. He calms. He slows. He is still. Then he laughs. Crazy, exhausted giggle. He sits up, looks at me with clear, glassy eyes. "Let's go Mommy, Let's get out of here"

One of the many downsides to the Autistic mind, at least to your brother.

Motormouth and Monkey are out jumping on the trampoline.
Motormouth: You can't see me.
Monkey: Yes I can.
Motormouth: You can't see me. I'm invisible.
Monkey: You're right there.
Motormouth: No, I'm invisible, you can't see me.
Monkey: Yes I can.
Motormouth: You can't get me because you can't see me. I'm invisible.
Motormouth: OW! HEY! You can't see me!
Monkey: I got you.
Motormouth: Hey! You. Can't. See. Me!!!
Monkey: I got you.
Motormouth: Stop. Stop. Ow. Stop.
Monkey: hee hee.

Ah, pretend play. Maybe someday.

And that's when I knew it was time to go home.

Met some friends of mine at Burger King so we could let the kiddos run wild in the play area while we studied (who were we kidding?). After playing for about an hour Monkey had a run in with a little boy, and I mean little, he was maybe 3 years old. Monkey comes down and is crying and really upset, and had some red scratch marks on his arm from where this kid had grabbed him. It seems from what I could piece together from Motormouth that Monkey wanted this kid to play with him and was grabbing him and trying to drag him off so they could play, and this kid didn't really want to go, so it's not like Monkey was attacked or anything, just the usual lack of social skills at work. Anyway, Monkey was worked up and crying and wouldn't go back into the play zone. The other little boy had gone to the bathroom and when he came back out Monkey points at him and announces-loudly- that it was "HIM, He grabbed my arm!! He did!! (starts to crawl off my lap) YOU WANNA PIECE OF ME???" (oh. dear. lord.)

OoooKaaaay. Time to go. I work at calming Monkey down and convince him that his arm isn't 'broken', just scratched. Meanwhile, Motormouth decides that he needs to go over to the table where this kid is sitting with his parents and explain what is going on. I call him back over and we get our shoes on. Monkey is still worked up and Motormouth then decides that the situation requires him to go back over, lean between these two parents, and tell the little kid that he 'can't hurt other kids at the playground, okay?'

It's time to take my socially inept circus and hit the road.

On the way out to the car, Monkey still can let it go. It's been 10 minutes. He announces to no one in particular "You scratched my arm. You are not my friend. I don't want to play with you."

Really?? Really???? It's good that it was in there, but it would have been nice if you had just led with that.

My Dad is pretty awesome too.

My Grandmother passed away.
She was 85.
The love of her life died 15 years prior.
Her health has been declining steadily.
If that all wasn't enough to prepare me, my dear, sweet, Grandma has been telling me for the past DECADE that she is READY. NOW. and that she can't wait to go and too bad for whoever isn't happy for her when her time comes.
She was awesome.

So, I was more or less prepared. G was prepared. Not only for her death, but for everything that comes after. My particular grieving process, my family's drama, the fact that we are going to laugh more than cry, the ridiculous things we will find to fight about...all of it. He was there 15 years ago when my Great Grandmother and my Grandfather passed two weeks apart. And for some reason he didn't run. (he's awesome too, maybe it will rub off) I'm grateful. Motormouth was a little prepared, we've been talking to him about Nana's failing health for some time now. The only person that wasn't prepared was Monkey. He doesn't grasp the concept. Which would be fine, except that whether he grasps it or not, he is still subjected to hordes of slightly familiar and completely unfamiliar people, new places and lots of hanging around. In other words, the worst case scenario possible. The showing was okay. He was very sweet and told Nana goodbye, then shushed me for talking while she was sleeping. He hung out with his cousins watching movies and playing games in the basement of the funeral home and was handling most all of it pretty well. The funeral itself was a slightly different story (we aren't even going to get into the nightmare of attempting to meet the extended family for lunch the day after...it was so awful it drove me to tears). Monkey told Nana goodbye again, and he sat in the church pew quite well for a couple of minutes...and then started to unravel. I immediately came to the conclusion that we should have asked for a reserved "family" pew in the back of the church, but this moment of clarity came too late, and everyone that attended got to witness the following show:

Monkey standing, turning around and sitting about 20 times, asking to go home about 10 times. Spontaneously grabbing my cousin James while announcing "tickle, tickle, tickle!!....oh, you're not Papa!!" Apparently my father was the only one who was supposed to be wearing a dark suit jacket. Monkey standing up and turning around in the pew, putting his hands on his hips, looking very sad and saying "I'm sorry, I didn't know! but I gave it to the Peach, because he's got.....HAIR" (we got this particular reenactment of the Veggie Tales Silly Song "Where is my hairbrush" twice.... Twice) One trip to the bathroom, multiple requests to be "all done", oh, and my very favorite, the entire time he was climbing up my body so he could rub my head and put his hands over my face. This particular move is something that is calming to him. He likes hands on his face and feeling the top of his mohawk. It's comforting. Somehow, it has become MORE comforting to do it to me. I can't get him to stop. It makes me freak out and start screaming- inside my head. By the time the service is over I am one step shy of being stark raving mad.

I bump into my dad outside the church and tell him I wish we had sat in the back so we weren't such a spectacle. My dad replies that we were fine. I point out that he was in front of us and had no idea what was going on in my little circus show. Dad looks at me and says "I didn't need to see. I already know that Monkey was doing the best that he could, so therefore I know that it was fine"

The awesomeness doesn't fall far from the tree.
I hope it doesn't skip a generation.

And then I told him the truth about the tooth fairy.

We have never told Motormouth that Monkey has Autism. We've never told him that he falls on the high end of the spectrum either, for that matter. We choose not to tell Motormouth about Monkey's diagnosis for several reasons, but mostly because we didn't want to label him and because it didn't make one bit of difference. It wasn't like you couldn't tell that Monkey was different, but we didn't want Motormouth to treat him like he was. In most situations, we didn't try to respond to Monkey as if he has Autism (Oh, let the poor little handicapped boy get away with that, after all, he is a poor little handicapped boy) and try really hard to hold both our kids to what we think is a 'typical kid' standard. I don't want you to think my kids behave well for kids with Autism, I want you to think my kids are well behaved, period. It never seemed to bother Motormouth before, but lately, there have been moments, and comments. The 'why does he have to act like that' and 'why can't he be like everyone else' kind. So, it was time to sit down and discuss the A word. It went a little something like this:

Monkey has Autism. That just means that his brain works a little differently than most people's brains. He thinks differently. It is why he has a hard time talking or making eye contact. It is why he walks around and talks to himself and doesn't play with his toys. It does not mean that he is sick, or that you need to be scared. It doesn't change anything you know about Monkey, he is still the same brother you had yesterday. The one that is really good at video games, and memorizes every movie he watches, and is always the first one to come running when you call for help. The one that will defend you if there is bully on the playground, or when you and daddy are wrestling. It does mean that things might be hard for you sometimes in the years to come. Monkey might embarrass you in front of your friends, people will stare if he throws a fit in public. We know that this will be hard on you, but you need to know that Monkey isn't trying to make you embarrassed, or that he likes people to stare.

When I was finished, Motormouth had two questions. The first one was 'will Monkey ever get better, or will he always have Autism?' unfortunately, my answer was I don't know. We talked about how far Monkey has come in the past few years, and that if he continues to talk to people more, then it will be really hard for anyone to tell that he has Autism. The next question: Can we go sword fight on the trampoline? You bet dude, good talk.

Can't argue with his logic.

The Friday before Mother's day both boys came home with their handmade Mother's Day treasures. I love this day, it's even better than the handmade Christmas gifts they make because these ones I don't even have to consider sharing with G. I get downright Scrooge-ish about these trinkets, to me they are amazing. I treasure all my little woven coasters, weird lumps of painted clay, plaster hand prints, and laminated poems. G thinks I'm a little weird, and I don't care. Other moms know exactly how priceless these things are. Anyway, Motormouth came home with his and wanted to wait until the official day for unveiling. I was a little miffed, but I sucked it up. Monkey was a different story. He came home all excited, pulled out his little pink gift bag and announced that he had a present!!! Look!! Look!! A present!!!.....for him. The next minute or two involved three grownups trying to convince Monkey that maybe the present was supposed to be for Mommy. Monkey was unconvinced, but let me help him open "his" present. It was a clay pinch pot that he hand painted. Monkey announces how beautiful his present is. The grown ups try again to remind him that maybe he had made this for Mommy. Monkey flips the clay pot over and shows me the bottom. "Look (you clueless Mommy trying to steal my present) My name!" sure enough, Monkey's name was scratched into the bottom of the clay. Can't argue with that.

April 2, 2010

Just a quick reminder that April 2 is World Autism Awareness Day. Autism Speaks is suggesting that everyone where blue tomorrow to help make aware and to spark conversations about autism in your community...do what you feel comfortable with. I am celebrating in my own sick little way....G and I are having a financial planner come over to the house tonight to sit down and try to figure out our kids' future without us in it. Ah yes, facing your own mortality- always a good time. So, if you have never had to think about special needs trusts and money managers for your adult children, consider yourself lucky and kiss your little ones on their typically developing brains. If you have had to deal with this particularly unpleasant parenting aspect, or if you know you should, get to it! and know that you aren't alone.

It's a new day in Monkeyland.

Living in a house with a child with Autism is like living with a terrorist. You try your hardest not to let this little non-verbal dictator run your entire life, but it comes down to endurance. How many battles can you navigate before you eventually just fall over? You have to pick and choose your battles so you can make it through the entire day. You let some things go. You may let him walk to the car in bare feet because he refused to put on his shoes in the middle of winter. You may sit down and watch the same movie or cartoon at least once a day for months. You might let him turn the light on and off for an hour. It's all a balance of what you are willing to live with and what you have to stand your ground on. It's like parenting a toddler on steroids every day for years. Am I making the right choices? I have no idea. Will he grow up and become a person that HE can be proud of? I hope so. This morning was a huge turning point for us. Monkey didn't go to bed well last night, he gave me a hard time and ended up getting a consequence for his actions. The consequence was not getting to play computer this morning before school. As expected he didn't wake up well and was determined to let me know how angry he was. But I have to say he managed to pull it together after a very tense 20 minutes. He willingly got dressed and ate and even rushed to put his boots on when the bus came 7 minutes early. I still pray for the day that he can talk my ear off and tell me what is going on instead of these days of tantrums and tears. But I am cherishing mornings like this where he was able to pull himself out of that void and choose to play by his mother's rules.

The Gray Area

Today Motormouth was telling me that his new best friend is no longer his friend because the friend lied to him. As I was encouraging Motormouth to give his friend another chance, that friends forgive and it would be sad to lose such a good friend, I realized how ridiculous what I was saying was. After all, I have been teaching Motormouth that lying is a terrible, hurtful thing to do. It makes people not like you or trust you. Lying is my pet peeve and Motormouth knows that I can forgive a whole lot of things as long as he is truthful. So, why defend his friend? I have no idea. By shrugging off his friend's lie am I teaching him that lying shouldn't be considered a big deal? His friend's little lie falls into that huge gray area that is so hard to explain to young children. I have to tell you, I hate that gray area. I don't like exceptions to rules. Sure the exception is what makes the rule, and what makes life so wonderfully complex. It also makes life exhausting. Ask any parent who's child is in the "why?" phase. The gray area stinks like moldy cheese.

Rule: Never, ever talk to a stranger, or take candy from a stranger
Exception: Except at Christmas, when not only will we let you talk to a stranger, we want you to sit on his lap, ask for toys and take candy from him while we take your picture.

Rule: Your body is precious and is not any one's property. It belongs to no one but you.
Exception: Selling your teeth to someone who comes into your bedroom at night while your parents aren't looking. (I blame the tooth fairy for prostitution)

Rule: Lying is a terrible thing to do.
Exception: Unless someone is doing it to you and not the other way around.

Rule: Sharing is mandatory when playing with others
Exception: unless it is your little brother and it is just easier (and I do mean quieter) to let him have it.

Rule: We have plenty and do not beg for things.
Exception: Halloween.


Yep. I do not care for the gray area. It gives me a headache.

Oh yeah, NOW I feel the spirit of the season.

I am standing outside of Macy's the Sunday before Christmas with Monkey, shivering. He's crying, I'm ignoring him, and G is nowhere in sight. How did I get here? I'm glad you asked. Frankly, I am getting tired of blaming Autism for these predicaments, so I am torn between blaming Motormouth and his ill-timed Christmas spirit, for Macy's and their charitable donation campaign, mail slots too small to stick your arm in, and Santa Claus.

Let me back up. Yesterday Motormouth decides that he should probably get around to mailing that letter to Santa before it's too late. G and I were a little relieved to find that we had managed to buy about half of his wish list all on our own, so he won't be too disappointed come the big day. Unfortunately, I forgot to have G take it with him when he mailed out the Christmas cards and Motormouth noticed. In what I thought was a flash of genius, I announced that we can take it to the 'Special Santa Mailbox' at the store, so it will be sure to arrive on time. I convince Monkey that he might like to write a letter too and help him write it (for those who care, rest assured that Monkey still wants a blue jingle bell for Christmas). We seal it and take the letters to the store.

Motormouth marches right up to the shiny red mailbox and drops his in. Monkey is unsure. Well, not really. He is sure he doesn't want to be in the store. He is sure he wants to be at home right now. He is sure he wants to keep his letter. "Don't you want Santa to bring you presents?" Motormouth asks. Monkey does. So he wavers. Not quietly. He doesn't want any part of the mailbox but he doesn't want to mess this up. We are starting to draw attention. At this point, I don't care. Leave it, don't leave it, it will be fine either way. Monkey makes his choice. He takes his letter and drops it in the slot. And immediately changes his mind. Things escalate quickly. Within seconds G and I are trying to scoop a thrashing, yelling Monkey up off the shiny tile floor. Note to self: Winter coats slide remarkably well across the entry way of Macy's. After several false starts G manages to get Monkey up and hangs on to him until we get out the door. The parking lot poses a whole other issue. Monkey has no intention of getting in the truck. It's like trying to stuff a cat into a coffee can. I am uncomfortable with the amount of attention we are still getting so G and I agree that G will leave with Motormouth while I stay behind and let Monkey work stuff out.

So here we are. Monkey is settling down and realizing the consequences of his actions. We both know it's going to be a long afternoon with no computer or video games. I'm not really sure who is dreading that more. G eventually returns and we all head home. Monkey apologizes and if the amount of giggling is any indication, finds something hilarious to think about all the way home. I only wish I could do the same.

I think I'll go back to pouring medicine down your throat.

Medicine and Monkey do not mix. Never have, maybe never will. We have adapted so far. When he was 2 or so we would bribe, Hershey Kiss in one hand, drugs in the other. "Monkey...you want this? (waving chocolate under his nose), then take this first..." Even at the age of two he was smarter than that, but would generally succumb to the pressure and take the medicine for the candy, making me feel like I had just succeeded in teaching my child two things. First- even when you know it is wrong or bad, do it to make someone else happy, and secondly- it doesn't matter how awful something is, you should do it if the payoff is big enough.
Great role modeling.
After a while the payoff wasn't big enough and he refused to take the medicine (which, in my sick little way, made me a little proud), so the end result would be pinning him down with his head between your knees and pouring it down his throat- praying that he wouldn't choke to death this time. (you want to see my mother of the year awards? They are all lined up in a row in the basement, right outside the torture chamber) teaching Monkey another all important lesson- the biggest and the strongest always win. We eventually came to a truce. If it wasn't an antibiotic or something he HAD to take, it was up to him. We encouraged, but didn't push it. If he didn't want the Tylenol to make him more comfortable, then fine. We also started buying those thin strips of cold medicine because he will take those, and the chewable tablets of Tylenol, which he might take a couple. During our swine flu encounter we were able to reason with him a little to take the Tylenol, explaining that it would make his head stop hurting, or that it wouldn't make him feel so hot/cold anymore. It (kind of) worked a little. Or so I thought until this morning. Monkey brought me a packet of sweet tarts that he got from a teacher at school yesterday and asked if he could have them. I opened them and handed him the tarts. He looks at the candy in his hand and his eyes light up "Look mommy!! (putting his hand over his forehead in that universal 'checking for fever' kind of way) The candy will make us all feel better!!" He pops the tart into his mouth and wanders off.

That's right kid, important life lesson number 4- Eat your way to happiness.

THIS is why I get so excited over trivial things Monkey does now.

When Monkey was 3 we were in the process of getting him diagnosed. We had already been through the process with Motormouth, so we knew we were looking at Autism. For those of you who have never had the pleasure of this experience, it goes a little something like this: Endless paperwork and questionnaires, asking you everything from your child's developmental milestones to their eating habits to your childhood to your husband's family's medical history (because you know all these things off the top of your head, and can fill them out in office waiting room with your child screaming on the floor at your feet or in your face because you have disrupted his routine) that you will fill out no less than 3 times for at least 3 different specialists. If you are lucky (like we were), you can take your child to a 'multi-disciplinary clinic' where all the specialists come to you, instead of you getting bounced from the Developmental Pediatrician, Neuro, Psych, etc. There are several phases of this office visit; the paperwork, the interview with the social worker, you and your child together being observed in a room with various specialists with one of those lovely mirrors on the wall, and possibly your child alone being observed in the 'fish bowl room' while some administrator attempts to do I.Q. and other testing (does it count if when your child is asked to identify a certain color block that he grabs it and throws it at the testers face? At least we know his gross motor is fine, he can hit her in the nose every time). We had a general rule with Monkey; as long as you didn't talk to him, look at him, or touch him...he MIGHT be okay. So you can imagine the thrill of several hours trapped in an office while your child is subjected to several people breaking that rule. We thought we were prepared for this experience with Monkey, after all, we had just been through it with Motormouth. We are over the humiliation and terror of being examined as parents (we know we are failures, we don't need a specialist to tell us that), and we just want someone to tell us what is wrong and how to fix it. The kicker on this is that, well, with Autism, they can tell you what is wrong, but they have no way to fix it. There is no medication, no therapy suggested (because your insurance won't pay for it anyway) no cure. You get a label, a name to call this 'thing' that has swallowed your child and won't give him back.
G and I are armed for battle. We head off to our meeting with the social worker. We are prepared. We both have our copies of our 17 questionnaires and a mental list of things we want to mention. (I wont even get into how clear it is by the differences in you and your spouses questionnaires that he really does have NO clue what happens in his house all day while he is at work) We are past the idea of wanting to present ourselves in the best possible light, we want ALL the dirty laundry aired and in her official report. If 'they' don't know who this child really is, how are 'they' going to fix him, right? So, in we go, ready to mention this, and this, and most certainly THIS....we are prepared. Until the perky little girl asks the first question. Turns out, all parents find this meeting to be an emotionally draining experience. Going through every negative aspect of your child, your home life and your (in)ability to handle it is indeed hell and she thinks she has found a way to make it a little easier for all involved. She wants to start out on a positive note. "What do you LIKE about Monkey?" she asks, pen poised. We are totally at a loss. While we were preparing to bring up all the bad things, we hadn't exactly been singing Monkey's praises. Our sleep deprived, war torn, emotionally exhausted brains struggled to change tracks. Let's see: He doesn't smile, or laugh. The only emotions he can express are anger and frustration, which are expressed constantly throughout the day and night. There is no empathy. I once fell down the stairs in front of him and realized that the only reason that he stood there watching me cry in a heap on the floor was because his sippy cup was empty and I was the only one big enough to pour him some more milk. Holidays and family get togethers were a nightmare. Monkey didn't 'do' presents. Wrapped or completely unwrapped and out of the package, it was still new and foreign and would make him scream and hit and make Grandma feel bad. I can't count how many times we all sat uncomfortably in the living room attempting to make conversation while Monkey laid under the kitchen table or in the garage screaming for 30 minutes or more until he could calm down enough that you could distract him with a snack or a movie. How closely we had to keep track of where he was at all times in fear that he would get too close to his baby cousin and push her down the stairs or hit someone with a toy. Trips to the playground usually ended with another child crying and his mother glaring at me and my evil/ill-mannered child. Any trip into public usually ended with me wondering why I couldn't control this small creature long enough to buy bread. Public trips always included me pretending to ignore the judgemental stares of other people, either because of his behavior or because of how he was dressed. Seasonal changes are just another routine change that I have no control over. The first two weeks after the weather changes meant I would have to literally sit on or lay on him and wrestle the new/offending clothes onto him every morning and every night. It was mentally and physically exhausting and some days I would just give up. He would win and wear his sandals and no coat in 45 degree weather and I would find myself not caring if he got sick. At least when he was sick he didn't tantrum as much, and he might even let me hold him and snuggle him a little. Bath time was a nightmare because he hated the sensation of water running down his body or head. There was absolutely no part of the day that didn't involve a fit of some kind. It was always a challenge to figure out what would calm him down when he got worked up, since nothing worked twice in a row. Will it be a snack, a movie, a toy, singing, a car ride with daddy, grandma reading a book, me totally losing it and spanking him so hard it left a mark? Add to all of this the stress of KNOWING that you aren't even close to providing him everything a 'good' parent would. I couldn't play with him because he didn't play. He watched movies. Over and over and over again. If he did 'play', it was alone, and he made it clear that you were not invited to join in. I didn't want to broaden his diet because something new on his plate would make him hysterical (a pea!!! Dear God no, not a pea!!!!!), I didn't want to try to read to him because by the end of the day the last thing in the world I wanted was to be near him, playgroups for social interaction were beyond us. I couldn't even get a real break from him because, unfortunately, I was the only one who had a chance at calming him down. This child was a black hole. I could throw everything I had at him, my love, my time, my patience, and he just sucked it in, never to be seen again. No smile, no kisses, no 'I love you, mama', some days no reaction at all. This child made me see all my flaws, my failures, every time I looked at myself or at him.
What did I like about him? I can't think of a thing. "Of course you love him, he's your son" my mother says when I called her in tears. Do I? I wonder in the darkest corner of my mind. "That's not what she asked" I replied. "We sat in there for an hour and I couldn't come up with a thing. The closest I came was that he was a good looking kid, you know, when he wasn't in the middle of a tantrum, and that doesn't really make me feel real great."
At the end of this ordeal, we got our diagnosis of Autism. As we are leaving the office, the Doctor smiles at me through my tears "Don't worry Mama, what you need to remember is that he is the same child he was 15 minutes ago. This diagnosis doesn't change that. You are taking home the same child you came in here with."

Yes ma'am. That is exactly what I am afraid of.

Monkey update

I just got a call from Monkey's new teacher at his new school. He started there today and he and I were there at 0800 this morning to check it out and sign paperwork. Turns out that he had a really great day, and was very active and engaged in everything. He did calendar and small groups and music was happy about it all. Until he earned his 4 stars (the magic number that lets him play the Wii at home). then he was done. He wouldn't sit for ending circle and was just running around. they tried to lure him with earning another star, but he just informed them that he already had his 4. :). So, she is going to bump him up to 5 stars and I reminded her that nothing works better than taking one of those stars away. So, anyway. good first day, better than anyone hoped, and I am glad they are figuring him out so quickly. He even asked one of the girls to come back and play with him and she did, so that was a big thing for him! This week is starting out pretty good, and I needed that!

Hey kid do you...want some candy, to go home, a sticker, me not to strangle you?

I got a note from Monkey's teachers this week. It seems he does great at school as long as the routine is followed. Monkey totally freaks out if there is any change to the schedule at all. I know both sides of this problem, we struggle with it at home too. You can't avoid schedules altogether, especially at school, just like you can't avoid interruptions to that schedule. I am a little frustrated that they can't figure out a solution that works for school without asking me. This is Woman 101: The Art of Manipulation. Try whispering in his ear "Hey Monkey, do you want a skittle?" if he says yes, say "Great! Let's go do (insert task here), then we will get a skittle."
This works on people of all ages. Maybe not with Skittles. You just have to find that person's "currency". How many of you haven't done a variation of this with either your kids or your significant other? "Would you like to (insert favorable treat)? Okay, do (insert unfavorable task) and then you can (insert favorable task/treat)."
I really don't want to spell this out for them again. Instead I think I will just send a note back saying:
"Oh, I am so sorry for Monkey's behavior. I wish I knew what to tell you, but the truth is, his dad is the same way. Let me know what you figure out to do with Monkey, because I would really love it if his dad would also quit hiding under the table when he gets upset."

I know how to HAVE FUN.

I'm trying to get the kids out the door tonight. I am trying, but failing. On a long list of hold-ups is the issue of footwear. We are going to a school carnival and I want the kids to wear shoes because we will be indoors. Monkey wants to wear his boots. "We will just stand here until you put your shoes on," I say. "We can't go and HAVE FUN until you put your shoes on." We all stand around for about a minute (Look at me, practicing my patience!!) and Monkey finally gives in and puts on his shoes. The idea of missing out on HAVING FUN is too much for him. He points out that they have red dots on them. They look like they have been put there on purpose, but I have no idea why. Something to do with getting them on the right feet at school maybe, and Monkey needs me to be impressed with his dots. "Oooohhhh!" I exclaim. "Dots!!" (Look at me, practicing my enthusiasm). I must have convinced Monkey that I loved the dots appropriately enough, because we were finally on our way out the door.....to HAVE FUN....at the school carnival. One stop on the way, I had to hit the bank ATM. As we pull into the parking lot Monkey announces "This is NOT fun." Glad you noticed, kid. Motormouth explains "you can't have fun without money." I am slightly disturbed that my nine year old believes this to be true. "There are lots of things you can do for fun that don't cost anything." I say. "uh, yeah mom, I know, but we aren't doing one of those things tonight. I was telling Monkey that we couldn't have fun TONIGHT without money.(like, duh)" Oh. I'll save my fear of raising materialistic monsters for another day. We spent an hour at the carnival playing games and winning candy. We did manage not to win one of those poor goldfish that you have to bonk on the head with a ping pong ball, my run as Dr. Dolittle must finally be over. So, after an hour of chaos I call it a night. The kids are both well sugared and one of them is sporting blue hair, and they are both bouncing around begging for cotton candy- it is definitely time to go (without the cotton candy). I was pretty impressed, we managed to navigate a crazy, loud, overly-crowded room with adults talking to and touching Monkey for an hour with no embarrassing scenes. I sort of feel like we should celebrate somehow..... This is a small victory of sorts...... I fight the urge to go to Meijer's and buy goldfish.

Pointless recount of my day.

Okay, so yesterday I am just not having a great day. Tried to make some phone calls in the morning but ended up leaving messages...tried to take a nap in the afternoon, but ended up having people returning my phone calls from the morning. That and a very strange recorded call about not wanting to saddle my family with expensive funeral costs...(what do I care, I'm dead.) Monkey got home and it turns out he didn't have a very good day either. He only earned one star out of the four he needs to get to play the Wii, so he was upset. In addition to only earning the one, I guess he decided to crawl under a table during his Speech time. When threatened with star removal, he came out kicking. Then biting. His principal had to come down and get him for a little trip down to the office. Within 15 minutes Monkey was asleep on a beanbag chair in the office (So THAT'S where my nap went!) So Monkey wins the bad day competition, because it only got worse for him when he got home and had to deal with an upset Momma. Not only do you lose Wii privledges, but all your handheld games too. Sucks to be you, you shouldn't try to bite people. At least Motormouth had a better day...no 6th grader physically assaulting his teacher like on Tuesday, so his week is improving. Then we had to go to the store to try to find Monkey's cereal, they have been out of it for almost 2 weeks now, and guess what? They still are. But I promised we would get some popcorn and the boys could watch a movie in Motormouth's room when we got home. At the store there was fighting over who holds Mommy's hand, who stands on the end of the cart, who gets to touch the grapefruit and who gets to be the monitor of who touches the grapefruit (guess what???? Mommy handles both those jobs just fine, thanks), who gets to carry the popcorn through the store, who unloads the cart, who checks the Coinstar machine for Canadian change......aaarrrggghhhhh. If they are driving me nuts they can't be pleasant for anyone else, so I renege on our previously agreed upon trip to Blockbuster and go straight home. Poor babies, have to watch one of the 150 movies you already own. When's dinner? when's dinner? When's dinner? (better question What's dinner What's dinner?) I banish them with popcorn bowls to the other room. Why does Monkey get more popcorn than I do? (I love him more, that's why) Monkey is climbing onto my top bunk. He is turning my light on/off. Monkey doesn't have quite enough language to tattle quite as well, so he just keeps coming in and saying "Moooommmmm....HE, Motormouth!!" I finally give up and stuff my ear buds in and crank up my Zune. A little Clapton should help....except I can still hear them. "uh oh...Mommy put her earplugs in, that means she doesn't want to hear us anymore. I am in charge now Monkey" "Okay!!!" This is slightly disturbing for me, but they both seem happy with the arrangement, so I guess I don't care. They leave me alone long enough for me to scrounge up some dinner and get myself remembering why I wanted to have kids in the first place. Oh that's right! I need someone to pay for my expensive funeral arrangements.