Not available

A couple of weeks ago our laptop died and so I had almost no internet access for about three weeks. Out of sheer desperation, as my shaking hands experienced internet withdrawal, I checked my facebook via my kindle keyboard. I couldn't write on my blog or facebook blog page. I realized, hell- I'm a google and facebook addict! I realized during those weeks that being unavailable, having no internet access, has its advantages.

When I login to my Twingle mami's facebook page I am instantly bombarded with the Autism. It gets a bit overwhelming. So much so that I have un-Autismed my personal page. Don't get me wrong- Facebook and the Internet are incredibly useful. Being able to connect with others who understand is absolutely wonderful. We learn from each other- I hope. The Autism community has its squabbles and disagreements. There seem to be 2 camps- those who believe its something to cure and those who believe we should just be more understanding. Let's call it the politics of it all. I try not to choose sides and honestly my news feed is stressful because both sides just like to politicize and blast the opposing side. Maybe I'm being Pollyanna-esq about it, because I honestly don't get why we all just can't get along. Does it really matter what we believe? I mean aren't both sides still trying to muddle along on the same journey? This side hates Autism Speaks, This side hates the homeopathic alternative approaches, this one dislikes something else-- Uggh whatever! Shut up already!

I'm just trying to do the best thing for my kids. I'm learning as I go, and for that I need all the help and resources available. So that means I stay neutral and make an informed decision. I'm not picking sides because maybe both sides have some valid useful information. So for now, we're doing ABA, Speech, Occupational Therapy, special instruction preschool, getting wrap around services- an in school aide. We have also started Omega 3-6-9, Probiotics, Digestive Enzymes, dairy free. We are doing Epsom salt baths. We are trying to go organic and specific carb diet. We have also decided to stop vaccinations for now. No more flu shot, no measles, no chicken pox- I mean I didn't get vaccinated for any of that when I was a kid and I've made it to my 30's. I'm sure plenty of folks will call me a bad parent for these decisions. And sure all of this comes with uncertainty and guilt. But you know what?

Now that my computer is in its second life, new hard drive and fully restored- its nice to know my Autism online community is there when I need them, hopefully I am helping some or educating others. I can choose not to google. I can choose to to turn off my computer and avoid facebook- or at least my blog's page. It's nice to tell my Autism news feed that I'm not available- It's kind of like a refreshing vacation. But I like that it's my choice and not because my computer died.

What are we fighting about. . .again?

Hubby and I argue every weekend. Every weekend. Just little squabbles about nothing and everything. I'm overly sensitive and he's sensitivity deficient. Words we have used to describe each other in the heat of the moment. It's funny and yet its not. Yesterday we had a big squabble that started out of nowhere, took a pause when family came over, and continued when family left. Fighting with each other is exhausting- nothing gets solved, nothing is changed- we just go back to doing the same things and having the same stupid argument. After each and every fight I wonder- what the hell are we fighting about AGAIN? And how can I make it stop hurting so much? Are all couples like this?
Yesterday, hubby was comparing the BOGOs development and behavior at this age to that of JD's. He said it made him feel better to know that it is different. Honestly that it all he meant. All I heard was, "we should have caught it sooner, we should have seen it sooner." The we meaning me. I asked him if he'd forgotten that JD met all his milestones except speech until he was 2. He replied that he believed JD was born with autism. That is something I can't accept. Hearing those words spoken outloud from my husband, my autistic son's father- it's like someone stabbed me with a flaming knife. It hurt so much. And he had no clue why.  Because when he said JD was born autistic all I heard was, "it's your fault, his ASD is your fault."

I have so much guilt and pain over my little boy and I don't think it will ever go away. Each day I plan out my day and hope we get to at least 3 things and I put away the pain and try to move on. I really can't take much more- my kids need therapies, my own health isn't that great, I wish I could afford to work so we had less budget worries, I wish a lot of things. Mostly I wish my kids were healthy and normal. I sit up at night bartering with God. My unanswered prayer goes something like this: "Take away his autism, take away the developmental delays- make my achalasia worse if you have to. Make my babies healthy, please God." I pray it often, during the day, during the night- often. Sometimes there's just a plea. "Make my babies better. Heal my babies. Help me Lord, give me more patience and understanding. Help me hurt less."

Maybe I should start praying for less arguments. But I don't, because in a way our fighting is kind of our way of grieving and dealing. Ok Maybe not the healthiest. It is also a sign that we need to talk more, understand more, love more. It's not that we don't love each other- the love is always there. It's just hard to remember that we actually get along most weekends. I say weekends because during the week we rarely have time to talk much less argue.

Are either of us perfect? No, we're very imperfect and like most couples I always mutter this to myself, "Lord I hate ____ about him/her. Give me patience and help him/her fix it." I think the Lord must laugh at my constant prayers or mutterings. The prayers of a half deranged and always hurting Twingle mami. I'm trying not to blame myself. But I know that the pain will never go away. As long as my kids are sick or need therapies- I'll always hurt. That pain is so strong and so overwhelming that it can never just fade into dullness. And I don't know what caused his autism and in the end it doesn't really matter. All I know is that I have to do my best and hope they know they are love by their clearly nutty parents.

Anniversaries

This weekend I will be celebrating two years of my liberation of being gainfully employed. Holy crap, I made it two years of being a stay at home mom? Wow that deserves at least 1 drink! It is the hardest most rewarding job I have ever had- and I have had a lot. Dear Lord it's exhausting, the pay is crappy, the hours are long, and you're always convinced you're a crappy worker. Every now and then hubby and I have the same conversation about me returning to gainful employment. I am still conflicted about being a SAHM (stay at home mom for the acronym challenged). I always will be.

In May 2010 when JD was about eighteen months old, I became a SAHM. We were talking about Baby #2, we were crunching daycare numbers and a huge chunk of my pay would go to daycare. My work life had become very stressful by the addition someone I'd like to call Cruella Micromanager DeVille. I was physically manifesting my anxiety with non cardiac chest pain (Achalasia gets worse with stress or anxiety). I was in hell while pretending I wasn't missing him; I was confronted with the truth each time I pumped milk. My priorities had changed, I was a mom 1st. The reality is that I returned to work with leaky boobs, teary eyes, and in love like never before with my baby. Hell No I didn't want to leave my boy and go back to work. I definitely did not want to leave 2 babies!



It really makes you wonder why the American culture expects a new mom to go back to work after twelve weeks of unpaid leave and pretend that your life hasn't changed. Who made those rules? Someone who has never given birth. We're still an emotional sleep deprived mess at 12 weeks- heck we're that even when the baby has turned 1. And yet corporate America expects us to go blindly back to work and pretend we're still the same career driven non woman. Yeah, doesn't happen! And then we're punished by being underpaid compared to our masculine counterparts. That just sucks no matter what way you look at it! We're screwed either way. Really, c'mon ladies admit it we are! Go back to work and miss your kid and feel guilt over everything or stay at home and feel guilty for not contributing monetarily. Oh you don't feel guilty or you feel you're contributing? I struggle with that. Maybe that's just me though. So that summer I said good bye to all that bullshit. Three weeks after getting my MBA, I got a new non paying job- being a stay at home mom to a beautifully energetic blue eyed moppet.

I've been working since I was 15 with one goal- make something of myself. As an immigrant kid you know that's you're responsibility and goal. I've always had work + something else going on. I'm very independent and I miss making my own money. I know hubby works and it's our money- he tells me all the time. But to me- it's not the same. It's not my money. I don't know how to change my feelings on this. Instead, I celebrate the anniversaries. Because it is hard for me to give up working and I am very much aware of having sacrificed my career.

I'm living a different life than I planned. Snort. Very different. Snicker. Thank you dear husband for being okay with taking a deep pay cut to our household income and for holding my hand in this journey we call Twingle mami (and daddy) in AutismLand. Happy 9th anniversary love. Our little marriage has grown into a family that pays me in hugs, kisses, smiles, laughs, and plenty of my own silent tears. I get paid each time my babies give me kisses, each time JD plays with my hair, each time the girls smile while I nurse them. On second thought- I do get paid. Very well. But the hours are still very long!

10 Things

Things Not to Tell Potential Buyers:
10. Previous owner thought he was a Mr. Fix It. Leading to more costly repairs for us. Because neither of us are Mr. or Mrs. Fix Its and the Idiots Guide to Fix Things just didn't cover a lot of Previous Mr. Fix It's "fixings" and even simple things like redirecting the darn dryer vent or changing and upgrading the fuse box lead to many a headache and a bigger check amount. So we won't be mentioning that.

9. Measurements in this house are very Odd. Our backdoor- weird dimensions. So when our ex-dog who needed Xanax bit through our door it cost us over $1000. to replace the old door. Because it needed to be Custom. We hear that word alot in this house- Custom. Custom = Costly. Costly gives us headaches.

8. Our dining room China cabinet hides the wall of New Jersey. Yup, NJ. Whenever you paint that wall, a bubble the shape of NJ appears. It doesn't disappear until the wall is completely dry. That's how we decided that that wall would be perfect for the China Cabinet. Because we're Pennsy folks and Pennsys don't like Jerseys. A Phillies fan can never like the Mets- thus the rivalry and our desperate need to hide New Jersey. Lest we be called Mets fans.

7. Our doorbell chime is possessed or bipolar. Sometimes it works, sometimes it doesn't. You never know.

6. The oven is the worst cooking oven I have ever seen. It has systematically prevented me from baking for the past 9 years we've lived here. Only a small- err Tiny- minuscule Turkey will fit in it. Be prepared to order a Turkey. Or settle for Cornish Hens. Oh ok- I am exaggerating. You could perhaps cook a baby Turkey in there. But again since it's a crappy oven- be prepared for lopsided burning.

5. The garage ceiling has these ducts and open spaces that seem to have no purpose and seem to be a half finished/started project of Former Mr. Fix It's.

4. The whole rear of the house is freezing or sweltering, depending on the weather. Our room- we always either need an extra blanket or fan. We even had new siding and insulation installed. We had energy efficient windows installed. It is still bloody cold in winter and freaking hot in summer.

3. No air runs through this house. It can be 60* outside but if it was hot during the day you will be sweating in the house throughout the whole night. No breeze gets in this house- doesn't matter how much you open windows. No breeze. Coolest place is the basement. In fact with the air conditioner on- the basement is freezing so you'll need a fleece even in summer. The reverse is true in cold weather. So make sure you have a tank top handy during the winter because the heat works really great in the basement! And the Bathroom. The blast from the AC vent in the bathroom opens the door. And you freeze when you sit on the toilet.

2. The neighbor plays the drums and has stinky turtles in the backyard. But to be fair- we had our dog indiscriminately use the toilet in our backyard for over 3 years and they never complained. The other neighbors (the other side) seem to be deaf and they seem to have daily arguments or at least very raised voices. I can hear my daily episode of what I call La Novela even with the tv or radio on. Both sides smoke and the noxious smell seeps through the basement walls, basement doors, and windows. If you're a smoker you'll fit right in. For someone who abhors it like I do- not so much. But when asked, I will say we have lovely neighbors.

1. We lose power all the time for no reason. In the summer, winter, before a full moon, when it's raining, when it's 100 degrees outside so 110 degrees inside. When you have a month's worth of frozen breast milk stored in the freezer. Whenever you think is the worst time to lose power- expect a blackout. And only our side of the block loses it, not across the way. So you'll be peeping out the wide open window in balmy 105 degrees wearing just underwear or hell buck naked (maybe not in the open window) and you'll see the lights on across the way- no sweat on those neighbors brows. And you'll want to yell and settle for merely growling. And you'll run upstairs to the corded phone or cell phone and call to hear the useless prerecorded message from the electric company.

Honorable mentions (per the hubby):

5 minutes of sun in the winter out front.
More snow to shovel! More ice to chip! This past winter wasn't bad, but the previous 3 were pretty rough with lots of snow, record level snow storms, record setting ice storms. Not that I helped much since I was pregnant or had a newborn in recent years.

Parking Wars & 2 car single lane driveway
People on this block seem to have an excess of cars. Or simply have big over sized cars that they don't know how to park. The spot in front of our house is highly coveted. There's an unspoken parking war going on over it- perpetually. One neighbor 2 doors down has a monster truck and is banned from his own driveway. He favors the spot in front of our house and our next door neighbor doesn't know how to park. Bad combination. Then hubby and I fight over who gets in 1st v. leaves 1st and moving the cars around in the midst of the parking wars with parking challenged neighbors.

To ABA or Not?

This is week 3 of ABA. Yesterday's session did not go well. It was bad. A pinched finger, a bloody lip and mouth, and lots of tears for my baby. And all the hurt and guilt that I don't quite know what to do about. So I ask myself to ABA or Not? Oh you want to hear about the injuries?  Sigh. Ok. I am furious about them. So much so that today, after I'd slept on it, I called his BSC to discuss yesterday's session. Let me back up and tell you some background. It's not as bad as it seems. I know- you're asking Say What? Really- its not as bad. But it does have me second guessing this behavior intervention therapy.

On Tuesdays JD has a male therapist (the only guy, the other 2 are girls) who is young, probably early  20s, he seems shy with me and its hard to interact with him. Mostly because I feel so awkward. I don't want to interrupt the session or do more harm than good, so usually I'll observe from the steps or listen at the doorway from the top of the steps. The sessions are in the basement playroom. I've put in a baby monitor and am restraining myself from setting up a security video camera in there. It is very hard to trust a stranger, especially a man, with your child. So I trust him enough to have a baby monitor in there, the door open at all times, and I observe often throughout the 3 hours. Our Tuesday Therapist isn't as engaging as our other 2 therapists. Maybe it's the maternal instinct, or that it's a school day- I don't know. But it never goes as smoothly.

Mondays and Wednesdays the ABA sessions don't go as bad. The ladies do a good job of redirecting, of letting me know when is a good or bad time for me to interact or interrupt. They even include me in some of the whatever you call them- trials? Whatever you call the exercises. So I feel included and it's teaching me how I should be approaching or parenting to get the positive behaviors.

Back to Tuesday- JD didn't want to put the pieces of Mr. Potato Head together. He did not want to sit at the desk. So the therapist grabbed his hand and forced him to put them on while holding him in his chair with the other hand. It wasn't roughly done per se. But he did accidentally pinch his finger at one point. I saw it. I was sitting on the steps observing. No acknowledgment that he'd hurt him. No notice that his cry of frustration had turned to a pained cry. After that JD ran out and asked me for a hug and a kiss better. Again, no acknowledgement that he'd been hurt.  Then I noticed that JD was soaked- pants  & shirt were wet. WTH? Therapist decided to fill a tub full of water and let JD play with ducks, in my newly carpeted playroom, and then proceeded to not make sure the tot didn't drop the water.  So I had a soaked kid and a soaked carpet for God knows how long before I came down and noticed.  When was he going to mention it, if at all? And how long was my baby wet? Seriously? Come up and let me know for goodness sake! What is wrong with you?  After changing him and getting him back down stairs for the remainder of the session, I was sitting in the living room listening to the session in via the baby monitor.

Then I heard a loud cry of pain-  The one where they lose their voice and then comes the WAIL of PAIN. The one that means REAL PAIN.  I flew off the couch and flew down the steps so fast! My baby was bleeding from the mouth. And the freakin therapist was saying, "Oh you're fine." Then to me- "He bumped himself on the chair."  Uh uh- no more. Me- "We're done."

I took my baby up and took care of the lip and calmed him down. Once calm- "JD, Did you fall?"
JD- "I hurt, boo boo."
Me: "I know, did you fall?"
JD: "Yes."
Me- "Did someone hit you?"
JD: "I hurt, boo boo."
Me: "Therapist name Hit you?" (You have to make sure right?)
JD: "No, I fell." (Mom breathing somewhat easier)
Me: " What were you doing? Playing?"

According to JD, he was jumping up and down on the recliner and he clipped himself on the back of it. So busted up his lip and the inside top of his lip. Lots of blood, lots of pain. He's ok now. But I am livid. I know accidents happen. Hey they happen frequently on my watch. But this is not the 1st injury with our Tuesday guy. After Week 2 of ABA with our Tuesday guy we had a red mark turned bruise on his shoulder from who knows what fall. Is it too much to ask to keep the safety of a ADHD ASD child a primary concern while he writes his notes and conducts the session? And if he doesn't want to grab him then call for me- don't let him jump up and down on a chair, don't let him play with water, don't leave him soaking wet, oh and notice when you're hurting him for Goodness Sake! I'm sorry, I'm frustrated and apparently not yet calm enough.

I did not call the BSC until today- on purpose. For 2 reasons-  I was fuming and I wanted to be objective. I asked hubby and he agreed I should call. This afternoon I had a rational and calm discussion with the BSC. Next week, she will observe the Tuesday session and guarantee your ass I'll be sitting in on the whole session. You have to earn back any trust at this point. You havfe shown that my child is not safe under your supervision dear Tuesday therapist.

Meanwhile we'll continue to ABA while decided whether to Not. I don't know if this is the right approach for JD. Forcing him to do something while sitting- just feels kind of how you break a horse or train a dog. It's a struggle. For now, we'll give ABA a try. It's just starting. Once we're through the rough couple of early weeks, we'll see how it goes. We can decide on an ongoing basis if it's not for us. For now, we'll try it.

Keeping Positive- yeah right.

This might be a bit of a downer so if you want something cheerful- feel free to skip this one.
Today is one of those days.

Last evening JD threw his dinner across the room twice because he wanted a Popsicle. Then to really get his demand across he hit, kicked, bit, and spit his food at me. In the midst of his outburst, I wondered- what if it's always like this? What if there aren't any improvements and we get stuck at a 3 year old level with significant behavioral issues? If at 3 he's this violent, what will the teen years look like? How the hell do I keep him from hurting me or the girls? He's getting real heavy for me as it is. I'm only 5'4" but my husband is 6'2". When I'm holding his arms and locking him in a hold while he thrashes and is having a spell, I'm holding 3 feet plus of almost 40 lbs of Anger. In a couple of years, I'm in trouble.

Yes, yes, I KNOW- it is what it is and we'll muddle through somehow, and there's always hope, blah, blah, blah. Give me a break. All the hope and prayers and all the other positive crap we believe isn't going to help me keep him or the girls safe from the rages now are they? What the hell is going on in their brains when they do these things? When he comes back from his road rage mental trip he apologizes and tells me he's scared and he's sorry. When these rages occur, he's not completely 100% with me and that hurts.

When he's self injurious, my heart bleeds. Seeing him slapping himself- that's worse than when he hurts me. I know there's a very big possibility that he'll always be self injurious regardless of how many therapies we take him to. I know I'll be there for him- but that doesn't mean I'll always be hopeful, positive, or even cheerful. Who the hell could be cheerful to have their baby hurt themselves or others for no apparent reason? Not unless it's someone well medicated or drunk. And that sure ain't me.

I read these blogs where people are angry at some of us Autism haters. Look folks, do I hate the people living with ASD? Don't be a jackass. Of course not. I love my son. Don't be even more insulting. Don't tell me what a freakin blessing Autism is. Don't ask me to look at the positives it has. Because from where I see it, from living with someone suffering with this freakin disease- there ain't nothing pretty, positive, or inspiration about the freaking disease. It sucks. Big time. And if you don't like school of thought then tough sh*t. In my house this is what ASD looks like when it gets bad. And I can't be accepting or positive about a disease that takes away my son's ability to not hurt himself or others. I can't accept or be positive about a disease that robs him of language that we are struggling to get back.

And I know we are lucky- lucky that he can speak and function as well as he does because I know there's always somebody else out there dealing with far more and far more severe. I am very much aware that we could perhaps regress more and lose what he's gained. From where I sit, there sure isn't anything pretty or hopeful about Autism. The only things that give me hope are the little bursts of sunshine I see shining through this dark cloud I like to call ASD. You know when he hugs and kisses me and tells me he loves me. When he runs and gets a toy for his crying sister. When he hugs and kisses his sisters. When he is able to speak in full sentences, when he's 100% with me and not in who knows where. I hope someday we get him to be present more often than not. I hope someday we can curtail the self injurious behaviors. I hope, really hope, that he can live on his own and be happy when he's older. But as quickly as thoughts of future days come, I need to push them away because its pure torture to think that far ahead. So let me say it again- I hate Autism. I hate the freakin disease. But I love a child that is living with ASD and I will always be his best advocate- even if it means I have to remain hopeful. Even on days I feel nothing but despair.

Am I burning out or is this just the norm?



JD running around like a nut (LCL 2012)

I've been so worried about JD getting burnt out and regressing. He's only 3 and yet I feel like we're on game show trying to beat the clock-- you know get all these early intervention services started before he turns 5. A mental check list in my head- gear up the speech, the OT, the ABA, increase social groups, blah, blah blah. He's only 3 and his schedule is busier than mine was when I worked and had a professional life. At what point do I stop worrying about burn out or is this just a new norm for us? Will this too be a part of worrying about my kids?

Here's a couple of my slip ups along the way- falling under the category Loser Mom Moments:

Soccer-
I tried enrolling him in soccer because he likes kicking the ball-- well that was a colossal failure. Who knew it was going to be an indoor event? Who knew there would be stinking wall to wall mirrors? The whistle constantly blowing? It was stressful for me and JD just shut down. We never went back after that 1st day. The shin guards and socks are still on the van somewhere. He did look cute in them.

Swimming-
 I thought let's take him to swimming- great OT, and it's a safety concern. Well most of the activities started this month and well we had a lot going on during the weekends this month it being Autism Awareness month. And earlier this month we were going through a I-Hate-Water-Touching-My-Head spell. Not great timing. So I said let's wait.

Music Therapy-
I wanted an ASD music therapy group only because the NT & Special Needs Soccer group turned out to be all NT and seemingly just JD as the special needs. Well turns out not enough people signed up for it and it was cancelled.

Gymnastics-
I didn't even enroll him in it. He's the right physical age but I don't know if he has the attention span and maturity to stay focused for an hour. He gets overstimulated fairly easily. He's so hyper and he goes from 0-100 so quickly in terms of excitement.

After gymnastics I said- hmm I'm going to stop for now. Let me wave the white flag. Maybe we'll just go to the playground alot this summer. Between that, the Zoo membership, the Please Touch Museum membership, I think we'll be fine socializing. I have lost the gameshow I think. Maybe I just need to take a couple of deep breaths and let him be a kid instead of scheduling everything before I burn out!  Here's a pic of JD being a kid at the Zoo this past weekend at the Lorax exhibit. JD loves Dr. Seuss.

JD at the Lorax vines (LCL 2012)