Today was better

Today everything with Sammy was better. No major freak outs. No violence. Nothing. I need to make some time to try and reconnect with him over the next week or so. I don't know how to reach him sometimes.

 

Sam is so explosive. One minute he loves you and everything is fine and the next he is swinging a shovel to kill his brother. Simply because he got angry. Simply because he didn't have a clear expectation on how to respond. It feels like I have failed.

But, today was a new and better day. Today no one got hurt. So for now that has to be good enough.

Ribbons and Bows

The sound of feet running up the stairs to jump on the bed with joy that Santa came doesn't happen here. Last year Nate got excited and jumped on the bed screaming that Santa came, and Sam decked him. Apparently he learned and it did not happen again this year. Sam came down 2 hours before everyone else and proceeded to have a full blown behavior. A carry over from the night before I am sure, but terrifying none the less.

The night before Daniel had to work his second job so I had to get all five children ready for my mom's house and it was horrible. Sam was physical and angry. He was anxious and that made him uncontrollable. We were supposed to be there for 5...we got there closer to 6:30. I just wanted to cry and quit to be honest., but the other 4 children deserved a Christmas. I cried a lot and by the time I got to my mom's house I was spent. The boys opened their gifts and enjoyed it all well enough. The littles got these cool helicopters and the spinning blades were enough to center Sam.  By the time we got home Sam was on the edge again and lost it. He got so upset he threw up everywhere.

Christmas morning was more of the same and I dreaded church.I left my camera at my moms so I have no pictures from Christmas morning. Daniel and I were in foul moods after dealing with Sam, not enough sleep, stress, and just holiday blah. I was sulking on the ride to church when I saw a tiny cross in the window of a house we passed. I must pass that house every single time I leave my house. But today I saw the little white cross and it made me think...
There are 26 families celebrating without someone they love in CT. 20 families that likely had gifts for their children wrapped and hidden and would give anything for the messy house and wrapping paper blizzard. 20 families that aren't going to get a Christmas morning at all. There will be no giggling kids, no toys, no joy in their house at all.

I snapped out of my funk really fast and looked back at Sammy, all puffy eyed and red faced from crying. I told him I loved him. I looked back at Nate and told him too...and Tyler...and AJ. I adjusted my attitude to one of gratitude and calm and it all seemed instantly better. I kissed my husbands cheek after church and reminded him.. we. are . blessed.

Fear, Focus, and Moving Forward.

Yesterday was hard. Not in the "I can't do this  because I might die" sort of hard, but the "remain in the moment and be OK" kind of hard. Infant and Pregnancy Loss Remembered day is never easy and it brings the flood of emotions I am never really prepared to handle. Adding into that a few of my dear friends have just lost babies as well, and I am pregnant now so I was a wreck yesterday. Sammy had a rough day, Nate had a rough day and baby was like velcro on a wool sock. My guess is that they felt my stress and emotions.

Sammy also had his bake sale yesterday for kids with cancer. he sold out in just 2 hours and made 36$. I have never seen that boy glow like he did yesterday. He went over to people at the football game to tell them about his fundraiser. Daddy went and helped him get the right words but he did it himself.

So we have been trying to figure out where to send the money and I think we have it figured out. Just a little more checking into things first.

I ended my day with a candle burning for Emma, for my friends, and family. I ended the day with dry eyes and full arms. I ended my day blessed beyond belief , peaceful but sad because I know my sweet girl would have fit in this family perfectly and I will miss her forever. I ended my day cuddled between my three youngest kids with Squish dancing inside my belly and all I could think was "how blessed I am to know, that even the end is not really the end. That what lies beyond me is more powerful than anything I could wrap my head around. I am blessed with all I have. I am surrounded by light and love."

I am going to let that be my focus as I move forward.

The question

     The last few days I have talked to dozens of people about Sam and Autism. It seems to come up and it seems as soon as they realize Sammy has autism they have questions. I don't mind questions. In fact I love them because if it open up communication between people we level the playing field. If everything is out in the open, parents will get the services they need and things will get better for everyone. Especially our kids!

     The question I get most often is "When did you know?" they rarely label it, they just leave it hanging there. The first time someone asked me I looked at them and asked "Know what?" In my naivety I had no idea what they were asking about.  It's a hard question to answer because it such a lengthy answer. The bottom line is I always knew, I just didn't KNOW.

    I always knew something was different about my boy. He stared at me intently from the day he was born. I remember sitting in my hospital room looking at him. I was unnerved that he looked like he both saw through me and into me all at the same time. It is the same look I get from him now whenever I get real meaningful eye contact. It's like he can read my heart like a book.  He never looked at me when he nursed though, it was always all business.
     I remember him at 9 months old. He didn't have an ounce of separation anxiety. I remember joking with my husband that it was like he didn't even know I was his mother. He would hit and laugh and if you corrected him nothing happened. He didn't cry at raised voices. He would wake us up at 10 months old with a video of veggie tales humming and rocking. We thought he was singing the theme song, yeah not so much.

     I remember him at 18 months retreating into his world, pulling away, and becoming angry. He would run from us everywhere we went. he wouldn't sit still at the table. He stopped talking, he stopped moving forward. The cars that he would once roll back and forth sat lined up along the floor. His blocks lined up by color as he stacked them over and over.
     I remember him at a family Christmas just after he turned 2. I remember how he darted around and frustrated everyone there. I remember that no one connected to him. He didn't even want to open gifts, we ended up outside in the cold spinning in circles.

     I remember him at 3 when his little brother was born and he would softly touch his head. I remember the fear as Sammy would flip out near the baby with his arms and legs flailing everywhere. I remember him squirting his uncle with a water gun and for the first time ever he cried at being yelled at.
     I remember sitting in the office being told that my son had autism. I remember thinking at first that the doctor had to be wrong. He was just young for his age and immature. He must just have ADD. Then I cried.

Somewhere inside though, there was relief because it had a name. This entity that was taking the joy of raising Sammy from us. I demonized it but I knew it was right. I knew all along, I just didn't want to see it.

I use to say that because of it I lost precious months and years of help he could have had, and while yes that is true. It's only half the story.

The other half of that is nothing would have changed who he is. My fluffy headed wonder child with the blueberry eyes and electric smile is still the same boy on the inside that he always was. Autism didn't change him, it was always there. Autism changed me. It's still changing me in ways I haven't put into words yet.

So when people ask I always say "I always knew he was special, I just didn't have a name for it" That, is the absolute truth.

Incongruity

Last week here the mercury (does anyone actually use mercury thermometers anymore) hit 98 with heat indexes over 100. I was very happy seeing as how happy hot makes me. I live for weather like that. it makes me sooo happy. Sam, not so much.

He kept asking if he was melting and if he was going to melt away. I tried not to giggle because he was honestly concerned he would. We pulled out the pool, we invited the neighbor, we enjoyed the water and  being splashed, had ice cream for snack and just lazed around. It was a pretty nice few days.

So far summer vacation hasn't killed me. When things are this good I start wondering if I could home school Sammy. If he would be happier in a less challenging environment. I begin to romanticize having him home and things running smoothly. I picture bunnies and tea parties and pretty yellow flowers.

Sammy filling the water gun and enjoying the bubbles it makes

Then yesterday I watched him suddenly punch his brother in the face. I heard the pop of his hand hit Nate. I watched Nate tumble. Then I remembered, "oh yeah, no, he NEEDS school"

Sam and Nate getting along for a minute

Even after all these years with him the incongruity surprises me. It still catches me off guard and makes me sad. I can't seem to wrap my head around how this awesome kid who is just now beginning to hug me can think nothing of punching his brother in the face! It still shocks me. It still makes me hold my breath. It reminds me that we are dealing with something I really don't have a handle on. Something I probably never will have a handle on. That is heartbreaking to me.


It's still , just one foot in front of the other. On step at a time.

Forward!

My Sam has been extra difficult at times lately, anyone who reads here knows the challenges we have seen the last few weeks. Something else is emerging however. Something AMAZING. He has started hugging me! They are still  out of the blue without warning. They are still random and completely unexpected. Regardless of when or where or even why they are happening...

I am still getting REAL hugs from Sammy.

Sometimes I forget where the real deficits lay because he talks so much, because of his behaviors, and because I spend so much time focused on fixing the negative stuff. It's so hard to see the stuff that isn't there, until it is actually there. It's hard to prove a negative right? So i often forget where we fall short because if it isn't there it isn't in my face. I didn't realize I wasn't being hugged until I was.

This may disappear. This may be gone in an instant. I want to hold it so tightly in my hand that no one even knows it's there. I want to stop time and never let it move forward. At an age where a lot of boys are starting to think hugging mom is "uncool" my boy has just started. He wraps his arms around me and buries his head in my neck. He snuggles in close and melts into me. He hugs me as though we are the only people in the world at that very moment. When my boy hugs me, I assure you... we are.

Second Chances

I have been puzzling something out. It's hard for me to feel like I don't have the answers. I just don't know what to make of things right now. I can't quiet wrap my head around any of it. Do you think there is such a thing as a Do-Over? Does God really do that? Is it possible? Maybe It's just wishful magical thinking?


On a side note Sammy has been super affectionate lately. He keeps rubbing his cheek against my shoulder when I'm wearing tank tops. It's probably just a a stim but Right now I will take it. I don't really get hugs unless I ask. I will get "hug-kiss-snuggle-hug" before I leave the house every time.

We finished our first week of summer vacation and we have all lived. I think that is an amazing feat in and of itself ! Don't you think so?

 Sammy has a behavior protocol at home he earns blocks for every half hour he follows the rules. Good choices,gentle hands,gentle words and respect. today he earned 12 total which has never happened before. However , even though he has the blocks he can count he is obsessing over them. every 2 minutes "how many blocks did I earn now?" over and over and over. enough to drive me insane. I think we may need a timer. Any suggestions?

One Foot

I want so badly to write a happy post, I do. I feel like sometimes people think my life is always horrible. It isn't I promise. I am just a control freak who likes to micro manage the world around me. I get upset when things aren't my kind of right or perfect.
My friend has a great saying "avoid the wrecking ball at all costs" well....
Easier said than done my friend...easier said than done. However it's just one foot in front of the other
You see, the issue with a wrecking ball is it starts out small. By the time it's this giant mammoth of destruction you have gotten so use to it that it's too late. It's hard to see it with blinders on.

So back to that happy post. I woke up today to some unexpected stuff. While that is downloading and processing I will leave you with this.

This is where Dan found Sam the other day. In , yes IN, the dog food bag with a bag of chips.

Planning

{this is by far the hardest post I have ever written or published. I am debating if I even have enough strength to publish this one. If your reading this , I must have put it out there. Please, be kind}

this is not my own photo. 

Planning what you might ask? Planning time for a nervous breakdown silly!

Yes, just a few days ago I sat at my very own kitchen table trying to see if I could schedule in a convenient time for a nervous breakdown. I don't do messy and I sure as hell don't love unplanned ANYTHING. I figured if I could keep it together until this family I am working with is done I should be fine to take it.

How absolutely control freakish does that sound?I know some of you (family & friends) are reading this thinking I am bat shit nuts! Well, yeah, maybe a little. the bottom line is I feel like there isn't time to go off the deep end. I feel such a weight of responsibility every moment of every day that I literally couldn't even find time to fall apart. Falling apart would also mean having to get messy. So many of you have commented to me about my honesty here at YLMB and I thank you for that. This place here, this sacred piece of space, is mine to deal with my demons. I vent here a lot, but I feel like I owe it to a lot of you as well to let you see all sides of it.

Not a big secret either, that I am Catholic. I talk a lot about my faith and my Savior so what I say next shouldn't surprise anyone.
My dear friend gave me something to try to help me through this, to get the "flame thrower" over the "bic lighter" of God's grace. The issue is never God, the issue is our humanness and the innability to let God into the spaces we need him to be in. Being the controlled person I am I tend to give him very little wiggle room. I love him and I still push him away and fight against him. Totally not proud of those moments , but it is entirely what it is.
So... I worked on this visualization that my friend Michelle had told me about .
What I got was Jesus beside me at the table. I kept expecting him to speak to say SOMETHING!! He didn't he just sat there silently with this look on his face. I don't know how to describe the look I saw but his eyes made me still. My mind was so still for just a moment and I heard this song



and then poof it was gone. I  know this sounds crazy to those of you that don't get it. I know to those of you that don't believe in God this must seem like pure foolishness.Regardless, I had to share this because, well, that's what I do here. No filter,no expectations, no limits. If I change that ideal now, then the last few years haven't meant anything.