Larger Screen

January 12, 2013

We have a bigger TV now. It was given to us by family that we adore. It's giant and Sam can't seem to stop touching it. He can't wait to play minecraft on it. If only he could keep himself together long enough to earn the darn Minecraft time. Tomorrow is yet another day and I am hoping it's a good one. Dan has to work all day so it's me and the kids. Wish us luck

Knowing You

January 11, 2013

I am so glad I know you the way I do.

I can watch those storm clouds roll over your face as the internal countdown begins to explosion  Sometimes I catch it soon enough to head it off at the pass. Sometimes I don't.
It's been as bad as ever and it hurts my heart. I see how hard you struggle and how much work just the little things can be for you. I know this life isn't easy for you. I know that you work harder than I can imagine. I know still waters run deep and there must be so much inside your head that I just can't reach.
It hurts me to see you struggle with disappointments and unexpected changes.

But moments like this afternoon when I asked you to dance in the kitchen are worth it. When you wrap your arms around me and hum just a few notes as you rock with me. You told me you loved me like a banana. I haven't hear that in so long. God must have known how badly I needed it from you after the week we had. You asked me for a cookie, I always give you three but today I gave you four. You smiled at me, eyes sparkling, and said "You gave me four, it's because you love me!" you hugged me again and ran off to nibble your cookies. I just soaked in the moment, because it is always gone too quickly.

Humble

January 10, 2013

I woke up and came downstairs today to a sink full of dishes and a full dishwasher. A clear sign my oldest boy had chosen to skip his chores. It's a known pet peeve of mine and it took everything I had to not come unglued. I may or may not have even burst into tears at least once, to which Grace responded by kissing me.

Sam has been spewing negativity in wild tangents that go on for 15-20 minutes at a time. It really wears on you after while.

II have been listening to my Dale Thomas CD and so all morning I kept hearing "it's your choice" in my head. Now I am not so sure of how much is really my choice and how much is simple bio chemistry that creates OCD. I took a bunch of deep breaths and relaxed and decided to just start at the beginning and go from there. I got the kitchen cleaned up and finally had my cup of coffee at 10am.  Needless to say it wasn't the best morning.

I didn't feel very blessed. I just felt tired and frustrated. I felt like once again I came up short because I should be able to somehow do it all, even 8 months pregnant. I somehow have this ridiculous idea that I should be Donna Reed. Grace was cranky and I was edgy and I kept trying to make the choice to keep it together and count my blessings.
I didn't want to write about feeling gratitude or feeling blessed. I wanted to wallow.

then I saw THIS post on Facebook and my perspective changed. Here I was feeling sorry for myself over a sink full of dishes and a facebook friend had lost her son. Her 8 year old son. He suffered through debilitating pain and illness for way longer than anyone should ever have to, never mind a child.

So today I am grateful that I can hug and kiss all my kids even when they don't do their chores, Even when they leave their stuff on the floor, Even when they roll their eyes and talk back because my kids are all still here.  We all know it can change in a moment.

If you can, take a moment and say a prayer for Kyle's family.

Concussed

January 9, 2013

Our oldest boy wrestles and I know I have mentioned before how very good at it he is. It's a rough sport for sure and injuries happen. We knew that going in.

Tyler is an Aspie and has learned a ton of great social coping skills  to the point where most people have no idea. He hides behind humor and silliness and it is one of the MANY things I love about that boy. As my oldest son we have a special kind of bond and we are very close. Ty tells me just about everything and he comes to me for advice. He is 17 and such a blessing to our family. He connects with Sammy in a way no one else can. My two spectrum boys really do get each other.

Tyler was at a meet this weekend and was dumped on his head, hard. He was rushed to the local hospital on a spine board complete with a neck brace. The trainer began to tell him they thought he might have broken his neck. I wasn't there, the meet was 2.5 hours away and Dan had to work. He must have been terrified.

But he is OK. He does have a concussion and he is off the mat for AT LEAST 14 days post headache, but he should be able to wrestle for sectionals. Right now we just want to protect him enough to get him there. Last year he broke his collar bone 2 weeks before sectionals and it ended his most promising season. He won't allow that to happen again and he is terrified it will.

I am so grateful for his coaches that make sure the kids are safe. We have an incredible staff and they all love the kids. Tyler has learned so much on the mat. One of the coaches is now Sam's coach too.

Someone asked how I can watch Tyler wrestle. It's simple. When your child has a passion for something, you watch. You endure crazy early morning rides to Dighton, PB&J for lunch each Saturday, cold toes, and aching backs from bleachers. You go and scream yourself hoarse, call out moves, and pray at the sidelines, because when your child has a passion, you support it even when you don't want to. This is the last sport I would have picked, but Tyler picked it and he excels at it. So I support him in any way I can.

I am blessed he wasn't seriously hurt  and that he can finish out his season chasing his dream and fulfilling his passion.

Snate

January 8, 2013

Nate is 5 and an absolute handful.  We often find ourselves calling his name  for one reason or another. We have been so use to calling after Sam that automatically we would start calling Sammy and switch to Nate. Nate then became ..Snate.

If he weren't so social, engaged, and articulate I would swear he was a spectrum kid too. He doesn't have any kind of diagnosis as far as anyone is concerned and to be honest I am not sure I am interested in one. He learned a lot from Sam, both good and bad. Now he is teaching Sam.

 Nate will often sit in the car and try to engage Sammy in conversation. He will ask about his day, his friends, his school work, even his lunch. Sam offers one, maybe 2 word answers but it never deters Nate. In fact Nate has taught Sam how to build Lego projects and follow the directions. Nate has showed Sam how much fun it can be to build cities, and create stories.

The fight like puppies and the cuddle up now and then. I am so blessed to have a ray of sunshine like Nathaniel. Some days (like today) he is just difficult too. He has those days where he just doesn't want to listen, just can't get himself together, and is all over the place. No matter how is day goes he cuddles up to me at night before bed, tells me he loves me and falls asleep beside me.

My Husband Rocks

January 7, 2013

It's been a long week back for the kids, which translates to a difficult week for me at home with them. My husband didn't feel well Friday morning and as a result didn't go into his first job. By all rights he should have been allowed to stay in bed. I was having a bad morning between some of the bigs' chores not being done, the trash ignored and overflowing,someone finishing the little ones milk, and not having any pants that fit. It all came together when I found a giant glass of coffee milk(where the littles' milk went) in my fridge by spilling it all over everything in the fridge, the floor , and my ONLY clean fitting shirt. I lost it and burst into tears. Daniel , being the wonderful husband he is, cleaned it up for me and let me go back to sleep for a bit, since the three littlest had a rough night.

We went to my midwife apt and listened to Squish's yummy sweet heartbeat (that sound never does get old). We had lunch together and My wonder hubby again let me just chill out and enjoy my meal.Grace took her nap and so did I... again.  Some husbands may have complained, but not my amazing man. He really takes amazing care of all of us and is by far one of the most solid people in my life. I know he is always on my side. He is an incredible father, friend, and husband.

He is absolutely my Prince Charming

and to top it off I think he is damn cute!

How can I

January 6, 2013

How can I feel anything but blessed with these silly little beans in my life?

A Wink

January 5,2013

You ever have one of those moments that convince you God is just giving you a hug? A friend of mine calls them God Winks. I was so down Thursday night all I wanted to do was cry. I was tired, anxious, spent, and just done. I was tired just thinking about the next day being nothing but the same....

then I heard this.

The Choice

January 4,2013



This is absolutely the last post I want to write today. Sam had a rough day yesterday at school, came home and things got tougher. By 6pm I had practically carried Sam up the stairs to his room for him to calm down. Normally no big deal but I am very pregnant. Grace has been a giant ball of clingy mommy neediness, Nate was full throttle all day long. My house was a mess and family stopped in unexpectedly to visit. I of course was mortified because my house truly looked as though a bomb had gone off.

What I want to write about is how fed up I am. How I spent most of the day and night beating myself up for being a failure.What I want to write is not what I am going to write.

I am making a CHOICE

Wednesday night my son's school hosted an amazing speaker. Dale Thomas, a spunky blonde with a southern drawl reminded me of something I had read and heard a dozen times. EVERYTHING is in my control and I am the only one who can CHOOSE how I handle it. She challenged me to wake up and say "good morning gorgeous" to myself.

So when Nate began acting like a child overdosing on pixi sticks, I made a CHOICE to turn on the music and dance with him.

When grace started crying for the bazilionth time, I made a CHOICE to dance around the room with her.

When Sam threw a fit and I had to bring him upstairs, I made a CHOICE to walk away , count to 100, and try again.

When family showed up, I CHOSE to smile and enjoy the company of two amazing people and not worry about how my house looked to them.
 I did not choose to stomp my feet and pout and cry... oh I came so close> There was no part of me that felt blessed. I was hopping mad, but every word Dale shared on Wednesday was still bouncing in my head.

"IT's YOUR CHOICE"

I would not have chosen a child with autism if I had been asked, but it's clear God did. The path of my life that lead to Sammy makes it's obvious to me, Sam was part of my big plan. I have learned so much from that fluffy headed child and I don't presume to know the plan of My Lord, but it gives me peace to think this way. I don't believe that God causes hurt and pain, that is just a side effect of being human. I do not belive that my son having autism is a horrific thing...it isn't cancer, it isn't death. I can still hug him even on a bad day. I do believe that it is all possible for his Glory. I CHOOSE to focus on that.

A Princess

January 3, 2013

I am so grateful for Grace. She is such a wonderful blessing for all of us. She is the only one who can make Sam stop short of a meltdown. He loves her with a ferocious intensity. She bubbles out sunshine and joy everywhere she goes. She adores Sam and really looks to make him happy.  He lights up around her!

We started calling Sam the baby whisperer when Grace was little because when she cried Sam would hold her hand and sing. It worked every single time. I never thought Sam was capable of such an intense connection, until we had Grace.

Back To School

January 2, 2013

I am SO Grateful Sam is back in school today.

 This vacation disregulation has been horrid for him. Every upswing moment we have had was eclipsed by darkness and tears.  It is quiet, Well as quiet as it can be with 2 littles still home. The stress load is far less I feel like I can breath again. I miss having him here and I hate the entire process of getting him out the door each morning, including walking to the clod bus stop giant and pregnant. However, 7 1/2 hours of knowing I will not have to restrain a child, break up a fist fight, or hear screaming and swearing. I will take it.

365days

I tend to forget all the wonderful positive things I have going on in my life. I really want to work at focusing on the wonderful amazing things that happen every day. My goal is to try to post at least once a day with something positive and happy in my life. It may not always be about Sammy. Feel free to join in if you like.

January 1, 2013

Sam was able to keep it together for the entire evening last night while we were at a friends house. 

It may not seem like a big deal to some but there were quite a few people and lots of unpredictable possibilities. He was awesome!

He held it together like a champ until the minute the car door closed, but when it mattered he was FANTASTIC. 

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.

Almost time...

It's almost Christmas and we have been so busy getting things done, lots of knitting and baking, some crafting and sewing, and a whole lot of eating too.

We celebrated Dan's family Christmas last weekend while his mother was here from Florida. I made tutus for the little girls and capes for the little boys,caramel for the teens and hats for some of the other teens. One of the kids even received a Grover hat! The littlest family member received a beautiful knitted cap.

Grace got quite a few baby dolls which have now become her very best friends, some very sweet clothes, and a tea set. We have had a tea party every day since. Nathaniel and Sam got Legos and cool remote cars, markers, tool belts and a house to color. The children were all very pleased.

totally ready to party

our morning getting out the door was difficult to say the least. All our gifts were ready to go, the food was waiting to go in the car, and true to form Sam was beside himself. Social stories did not seem to help him this time like last year and he just could not pull it together. A quick text to my MIL to let her know we may not be going and to please come get the gifts for the kids. When she showed up we had just finished restraining Sammy, he had no shoes on, his face was puffy, and I was in tears. We couldn't find Sam's shoes anywhere. a hour of looking resulted in absolutely nothing more than being totally frustrated.

I made an executive decision to jump ship. I sent him with my MIL and older son. He put on my crocks and he went.
he spent the day in the basement , alone. He played alone the entire time the party as going on (after I made sure he was not going to get hurt or escape). He did come up to eat. He did not want to come up for presents and at one point even told Daniel he just didn't want any presents. An hour or so later I saw him from the corner of my eye walking along the hallway rubbing the plaster. He came in and opened his gifts.

Lego Reaction

In the long run, it was a win. It still makes me sad to see him separate himself from everyone. I am glad he knows what he needs and that we know enough now not to force the issue. A few years ago that wasn't the case. He just enjoys these things in a very different way.

Sam inside the bench, with the Legos.. Sammy Heaven

I spent the difficult times during the party (before and after too)  giving up the stresses for the souls in purgatory. It's no secret social responsibilities are hard for me too. I have tried very hard this advent to keep the focus where it needs to be with the children and myself. So many times I came up short on what I had hoped for myself.



But like everything else, God isn't done with me yet. I look forward to celebrating the birth of Christ with my family and making next year better. I am blessed beyond all measure to have healthy wonderful children, a loving husband, and Faith that all the things that suck in my life will get better.
Those tough days, are the days when God is working his magic on me to help me be the person I was always meant to be.

Rethinking it All

I was sitting here today having a little pity party for myself. Sam has been a bear lately and full of anxiety and stress. I was thinking about all the Christmas-y stuff we just can't do because Sammy can't handle it. I was pouting over the gifts I can't afford and all the stuff that isn't done. I sat here  upset because my children didn't finish their chores and I am STILL drowning in laundry. Frustrated at the aftermath of the flooded basement and my cumbersome belly that just hinders the clean up effort. I was angry that Christmas wasn't going to be "perfect" I was wallowing. Not pretty but it is true.

Then I caught a Facebook status about Connecticut and a shooting. I assumed it was more of the same insanity that goes around this time of year. Someone lost their job and lost their crap and as a result something bad happened. I however was not prepared for what I found. A school, an ELEMENTARY SCHOOL, for kids 5-10 years old was at the center of the story. Possibly 27 people killed, more than half of them likely children.


I am sick to my stomach. I can't wrap my head around the tragedy that will ripple through the US over this senselessness. The families that lost a child, or other loved one, the first responders, and the survivors aren't worried if the trim in their kitchen is painted in time for Christmas.

Suddenly it doesn't matter that my tree hasn't been decorated, or that the walls need to be painted.It's irrelevant that they won't get super special gifts or see the lights at Lasellete. It doesn't matter if the laundry isn't done... it's never done anyway.

It made me really rethink about what is important this year and what I need to focus on. I am rethinking it all and changing my plan.
I will cuddle with the kids tonight no matter how cranky and miserable they have been. I don't care if their chores are done, I don't care if the laundry beeps. It. Can. Wait. because these guys are growing up far too quickly and they won't still be there later. I am sure the parents of those children are wishing they could do the same.

PINNED

Sam really wants to participate in a sport. He has asked to play soccer but in order to do that he would need to wear socks which he refuses to do.  Plus we did find that soccer moves to fast for him. By the time he is aware the ball is near enough  to kick its already going to other direction. It was difficult to watch him play and cry that year. One game he bolted for the parking lot full of cars and another mom caught him.

Baseball won't work because as physically adept as Sam is he doesn't have the patience or the coordination for it. Plus you have to wear a helmet and according to Sam "helmets smell like butt"

Running would be great but Sam sees no purpose in running just to run faster than everyone.

What we needed was a team sport that will utilize his amazing strength, teach him self discipline, allows him to function as a single unit while still part of the team,  does not make him wear socks, helmets or any other uncomfortable gear. Tall order that I really wasn't sure we would find.

Our oldest boy wrestles, and wrestles well. In fact he is AMAZING at it.

 His coach teaches a youth program but there was no way we could afford the 200$ to place Sam in a program that he may just quit week two. Sam was invited anyway and everything came together to allow him to try it. Nothing short of a miracle. Tyler is assisting with the youth program coaching and both Coach P and Tyler know all about Sam. He was invited anyway. Did I mention that?

Of course he is all over the place and he can't stand still. The other 8 year old in the group stands there and listens intently to the couches. Sam takes some extra direction and extra work. he watches himself in the reflection of the dark windows... a lot. But he is learning. Coach P is so patient and wonderful with him. Sam seems to be really enjoying it.

Week two and no refusals and he has even done his homework before practice.

Now That is PROGRESS
and all forward progress counts.

New Beginnings

This week we passed the anniversary of Sam's diagnosis. I thought about it and considered writing about it, but I chose to focus on something else. It was 2007 when the word autism connected to Sam and we have come so far since then. It hardly seems like the same life honestly. Most Days. Other days It's still just as bad but with a bigger child to control, and that can be hard. The difference now isn't so much him , though he has made huge leaps the past few years, it's me. I understand more of what makes him tick. It took me 8 years to figure out just a small slice of what makes Sam I am who he is.

I am working so hard at focusing on advent and my heavenly father that I am making a conscious choice to not dwell on it right now.  Something amazing occurred to me this year Sam's anniversary of his diagnosis falls on the feast of St. Nicholas. Sometimes gifts come in packages  wrapped with shiny paper and beautiful bows, others simply fly under your radar. Maybe that is how it is for us.  Sam is a gift to all of us, even on those difficult days that make me cry. Sometimes the best gifts are the ones you least expect.

Christmas is coming

It's advent season and most people are thrilled and excited about the upcoming christmas season. Here, not so much.I find myself longing for Christmas as I had pictured it would be.   I had this unrealistic idea of what I THOUGHT it was going to be like. I use to try and make it happen. Somewhere along the way that changed.  Yes, Autism was part of it, but there is more. Every year I am slapped with a hard truth that the idea of what my life would be is very different from reality. For kids like Sam this time of year is really hard. I have never really liked this season either, to be completely honest.  My christmas morning is full of meltdown and chaos. Christmas  Eve I inevitably find myself  surrounded by mountains of wrapping paper and tape trying to get it all done. I always find myself in tears at 3 am staring at the tree thinking "There has to be more to life than this" and praying we at least get through the day without having anyone seriously injured by Sammy. I typically come "unglued" 15 bazillion times in one day and I miss it all.

my blessings

It happens a lot lately really, I just fall apart. I burst into tears for no discernible reason. In fact the other day I began to laugh at something and found myself laughing so hard I burst into tears and began sobbing. Sneak attack for sure. I'm working on it and leaving a lot of this to God because I'm just not big enough.


Typically this season means we will spend too many days with people who just don't get it, people who think we are crazy, overly lenient, overly strict, too uptight and that Sam is just spoiled. Some will make comments, some will roll their eyes, and maybe just one of them will finally understand it this year... wishful thinking I suppose. I can't just avoid them because some may or may not be related.

This year I am willing it to be different...

I received a great pamphlet from my MMIL (meddling mother in law, which is my affectionate name for her) about making advent special. We spent some time together Sunday coming up with ways to make this season special. We have some good ideas. We even played a game answering questions about the first days passage (it was based on Sunday's Gospel reading) the kids earned chocolate chips for each right answer. I think they might have even had fun...maybe.

We still don't have a tree, my advent calendar I wanted to make is still not done, and I have only a few presents made for Dan's Family Christmas Party. The littlest girls are done, and the youngest boy. The two middle boys should be done this week, then its simple stuff for the older Roy kids (a scarf and some caramel popcorn). Because things are so very tight this year financially (Dan had to get a second job) Everyone is getting homemade gifts. There are some who will not appreciate it, some who never say thank you, and some who seems grateful.
But I won't let it bother me. I made some baby steps this season for all of my family. My Dear Friend Michelle has an advent link up and so I am joining her.
I made a list of HOW I want to implement a better advent season at my house..baby steps right

I will enjoy my kids.
I will take 15 minutes Each day to sit quietly and talk to God. Not complain but Thank
I will make a list of what I love about each child and place it in their stocking for Christmas Eve.
Before I Freak Out I will count to 10 and ask if it is really worth it.

Time To Write

I should be happy. I have a wonderful family. I have a loving husband. Everyone is healthy. I should just count my blessings. I need to just get over it. Give it time. It could always be worse...


I have heard it all

I've lived with depression on and off since I was a little kid. I can remember that black hole feeling as early as 6 or 7 years old. It sounds crazy I know. You probably know more people than you think that are in the same boat. Friends that stop calling you or stop leaving the house. Sometimes they change in ways that don't make sense to anyone. They may even still smile, but it never makes it up their face to their eyes. there are so many of us , silent, hiding, and pretending it's ok.

from web MD  According to the National Institute of Mental Health, symptoms of depression may include the following:

Difficulty concentrating, remembering details, and making decisions

Fatigue and decreased energy

Feelings of guilt, worthlessness, and/or helplessness

Feelings of hopelessness and/or pessimism

Insomnia, early-morning wakefulness, or excessive sleeping

Irritability, restlessness

Loss of interest in activities or hobbies once pleasurable, including sex

Overeating or appetite loss

Persistent aches or pains, headaches, cramps, or digestive problems that do not ease even with treatment

Persistent sad, anxious, or "empty" feelings

Thoughts of suicide, suicide attempts

~it's been a while since I have written. I feel like this needs to be out there.I have fought this my entire life and I have learned there just aren't any easy answers. There are no magic bullets that pull me out of this funk. I also have Seasonal Depression (also known as SAD, how fitting) so this time of  year is hard already.
Usually I can keep things together enough to zombie my way through my day and function in a way that no one really notices. Over the years the depression has increased my anxiety which has in turn created a monster OCD issue.  I know I see things no one else will notice but those little things make me feel crazy. This time it is as bad as it has ever been.My family needs me, so I function, sort-of. I can't ever die because then, what happens to Sam? It scares me when I feel like this. Daniel knows I am struggling and he is trying so hard. It just isn't something that can simply be fixed. Add to this being pregnant and you have a recipe for disaster. I feel like I wake up every day in foggy tunnel. I don't want to get out of bed, I just don't want to do anything, even the things I love to do...like write.Writing was my release, it was cathartic, calming and joyful. Now nothing is. I find myself often thinking "I should be so happy about this" but I am not. I just feel kind of ...numb
I know medication is an option. I know it works. But I also know that I took that route once, when I was pregnant with Sammy. I also know that 5 years later a study came out linking the antidepressant I took with autism. I know plenty of people have taken the same med without the same result. I know I have to do SOMETHING. I just can't...
I am not writing this for sympathy or anything of the sort. I know I am not alone, and this time of year can be hard for lots of people. I hope that by writing this, by putting this out in front, those of you in the same spot and feeling alone will know that you are NOT in fact alone.
Mental health can be such a taboo subject for so many. People believe we are just weak minded, self centered, or looking for attention. This is real, it hurts, and it sucks. So if you're reading this and your struggling, I want you to know you aren't alone... not for one second.

All the Small Things

Today my DH has provided a post for YLMB.  He wanted to make this small gesture to contribute to this blog.  I hope you enjoy his perspective.




All the small things that I see day to day are what balance the scales of caring for a child like Sam. The outbursts and screaming and hitting are just part of the other side of that scale. The negatives are so big they tend to overshadow the positives. When Sam hits his little brother or spits on his older brothers, the reaction inflates the impression of the behavior into much more than what it is. It’s a behavior stemming from stimulation within Sam by an outside force none of us even have on our radar. We handle it and move on. Every day we need to intervene on behalf of Sam rather than because of him. Day after day, over and over, the strength of mind, body, and will are challenged and drained from us. He his getting so big it isn’t easy picking up his “dead weight” off the floor. There I go again focusing on the negative. This is about the small things that are overshadowed by what we tend to focus on. So here is a sample of the small things that get overlooked.


The other night he asked if he could feed the dog. I said yes. I love to encourage anything that could give my boy a greater sense of self worth. “Go ahead and get the bowl” I said. Sam took the bowl into the pantry where the bag of dog food sat. Sam said “One cup, right?” “Yes Sam, the measuring cup is 1/3 cup so we need three scoops”. I held the bowl wile Sam dug into the kibble with the measuring cup in his left hand and very carefully ran his right hand across the top of the cup to make it perfectly level. What pride he took in counting out each accurately measured cup of dog food. He fed the dog he loves under the watchful eye of his father whom I hope he knows loves him with great depth. I couldn’t get the images of Sam leveling the scoops of dog food, out of my head. I still wonder is his methods and care were because he wanted his best friend Chance the dog to have exactly what he needs of if it was because he wanted my approval. Or maybe he just did it for Sam. Because in a life with so many struggles, he needs to feel like he can do it. We all know you can do it!

Bed time was met with more than usual resistance. After a consistent push to get him to brush his teeth, we had to get up the stairs. He pushed back against me with his feet on the next step up. With a small push against his back he leaned back farther and moved his feet up more steps. With his body almost horizontal, I continued to push on his back while he took one step at a time until we reached the top of the stairs. To get to his room he needed to go right. Sam went left, real fast. He busted into his older brother’s room and began to wreak havoc. Ushering him out of the room, he made another sharp turn into my room. The bed is not a trampoline, but one might think that it is with the number of jumps that have been pushed down into its wary springs. New plan, scoop up the boy and plant him in his bed and tuck him in. There he was motionless in his bed. The light from the hall illuminated a single path of floor, bed, and wall. “Dad, you read me a story”? I thought about all the chores and tasks to be done before I could get to bed. “No, not tonight Sam” His face was angry at first, but within seconds it crumpled into sadness and pain. “I hate you! You never play with me anymore!” This outburst was followed immediately by genuine sobs and tears. I thought about how I needed to put his younger brother in his bed because he fell asleep cuddling with his mom on the couch. The chores needed to be checked. The garbage needed to be taken out. I needed to make a lunch to take to work tomorrow. I wanted to mop the kitchen floor after everyone went to bed so there would be no traffic on it while it dried. But none of that mattered when I saw his pain. He was right. My attention was given to his mother, to two older siblings, two younger siblings, my job, the house, etc. What about Sam. Why hadn’t I spent any time on the floor with him playing Legos, or watch him play a video game, or take time to do more than just ask him how his day was. Asking about his day isn’t fun for him, there is no quality given to our relationship. My wife wants to know that I am interested in her day. It means something to her. I don’t think it means all that much to Sam. So I told him I would be right back. After I put his little brother in his bed, I invited Sam into my room to watch some funny videos on the computer before he had to go to sleep. We laughed and shared a great time. Only about ten minutes went by before I told him it was time to go to bed. “Okay Dad, that was so funny. I love you”.

It turns out that the small things are the biggest most important things of all.

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.

Tipping Point

I have been quiet because I would rather not write then bore you all with the darkness that seems to have taken over here lately. People that know me , know I tend to pull in when it's hard. October is infant and pregnancy loss month (along with a ton of other causes). October 15th is a difficult day for me. I find this  year that I am needing release somewhow. I need to put meaning into who Emma was, I just can't figure out how just yet. I need to find some sort of solace in this pain before Squish is born.

 To add to it, I am nursing an injured hand after a few out of control moments with Sam the other night. He has been a mess off and on. One minute he is wonderful and better than ever, the next, forget it. He hasn't swung at me in ages and this week it has happened numerous times.

So please bear with me as I pull myself together. I promise I will get back to posting normally soon. I have even recieved some kind of cool fun award thing. Tomorrow I will tackle I promise.

Until tomorrow...

laughter

Some days are just chaos here. With five children running around it's crazy enough, but adding a toddler, a hyper 5 year old, and a child like Sam into the mix and it's a recipe for disaster. Some nights it ends it tears and once in a while it actually ends in laughter. Today since I am trying to be more content and happy it ended in laughter. Mostly.

We had dinner and Sam was desperately on edge. Grace was done before we even sat down and Nate was freaking out over his green beans. Then I left the table and the boys let Grace loose covered in fish, quinoa, and green beans and gave her a handful of chocolate candy. Her onsie was soaked and she was smeared with food. Sticky hands and a sticky face  contaminating everything within reach. So Daniel took off her onsie and cleaned her up a little. She then took off her diaper and began to play with it covering herself in poop. Nate went running by and stepped in it, panicked, and continued to run around the house screaming rather than sit down where he was. Meanwhile Sam was upstairs screaming about needing help with something.

My choices at that point were to either completely loose my crap

or

Laugh and deal with it.

I admit I was cranky at first, but within minutes I began to giggle at the entire situation. Nate found that funny so he began to laugh. At that point Sam came down and seconds later was wearing nothing but a plastic bag.

I am blessed to have the children I do. Not despite the chaos but because of the chaos. These children are mine because God feels I have something I can impart to these children, and in the mean time they impart plenty on me.

I use to write

I use to write poetry...

Many moons ago when I still felt like a whole person. Before my life was consumed by the fire of my children, I would write pages and pages of stories and poetry. I used it to express the disappointment in my life and the fear I felt every waking moment. It's been 8 years since I have written any real poetry. I just don't FEEL the same level of sadness and desperation I did back then. I never learned how to write happy poems.

So much has changed in the last 8 years. So many things are so far from where they started.

I still don't know if it is mostly good or mostly bad.

In My Power

As a mother parent you do whatever you have to to protect your children. You walk through fire, across broken glass, and leap tall buildings in a single bound (OK so maybe that's Superman), but you get the picture. It's our job to take care of it, to make it happen, and to fight what needs to be fought. What happens when the person hurting your child, IS YOUR CHILD? What am I supposed to do with that?

This time of year is hard for Sam. On the plus side he did get a behavior report from last week telling me he was doing fantastic. He was working hard and redirecting well. Then Friday is began to fall apart, by Saturday it was a disaster. I began to rethink everything. By Sunday he had hurt himself. His little arm bruised and his nail bed raw from picking and chewing. It was still escalating and I knew it would get worse before it got better. Monday night we had to restrain him in order to keep him from really hurting himself or someone else.A year ago I would have felt like this was the end of the world, but thanks to "My Ponytail" I have been keeping data on Sam for years. (It's normal ...for him. Every year we struggle from the week after his birthday until Christmas, then it gets really bad until after April Vacation. After that it is great until about June, and then we fall apart again until school is done. )

He went to school today, he had a rough day and would not redirect. I hate homework time but I was able to get him to do some of it. He seems a bit better tonight so we may have turned the corner for this run of bad things. I can hope.

As I watched him tonight nibbling the apple crisp I made for desert I couldn't help but think about how far we have come just to get here. I look at the remains of the last four or five days, the bruises, the broken toys,   and the fluttering of his fingers in his lap and all I can think is that I would do anything to protect him, but I just can't protect him from himself.

Sunshine

Today was Sam's open house. I usually hate these things  because I always wonder if people look at me and think "See, that is why he is such a mess" This year was pleasantly different.
Sammy could not wait to go o Open House. He was so excited to show us his class and his desk. We got there and he showed his teachers his treasures that he brought with him. Kids said hi to him and he smiled. He ran off ahead to his classroom, but he waited outside.

The behaviorist, the principle, his teacher, and his reading specialist all said the same thing "he is really doing so wonderfully this year. He is working hard and putting in a real effort. We are so Proud of Sammy" It was enough that I almost cried. I so desperately needed to hear something good about him, because things at home have not been easy.

Sammy in his new obsession ~masks

Then I had a parent come to me and tell me her son talks about Sam C. all the time and was wondering if they could play together some time. Another mom said her daughter says great things about Sammy all the time too.  Some of the kids really wanted to be around him.

I left feeling pleased and happy. I love our team. I love the people who work with my boy and help him over the rough patches. I KNOW this won't last but for now I will just sit back and enjoy the sunshine

It's all Possible

 



So I have spent some major time crying in my cornflakes the past few days. It's rough here. Sam's first spelling test came back and it was terrible. He is struggling with so much right now and I really just don't know how to help him. Tonight he said he wants to be a doctor. He wants to treat rabies and be a doctor.
Of course I told him he could do anything he set his mind to. I encouraged him and smiled. The entire time my heart was shattering in my chest thinking about all the things he would never do. He can't possibly become a doctor...right?

Then I saw this

autistic-basketball-star-jason-mcelwain-qualifies-for-boston-marathon

Wow.I remember watching the video of this kid playing ball and thinking "WHY the hell didn't someone give him a chance BEFORE this?" So I read the article...twice.
Maybe it's pregnancy hormones, maybe it's being so tired, who knows. I started to cry again.


It changed my perspective on Sammy's options. No, he may never be a doctor, but I can guarantee he will surprise us all.
I want people to believe in my son and here I was doubting his dream. Somewhere in between here and there I stopped believing in my son and his ability. I always swore I would never do that...
Never say never... it's such a long time.

Raising Money

We watch a lot of movies here at the end of the day to kind of wind down. T.V. is almost always a sure fire way to get Sam to sit still, switch the language of the movie and instant success. We have a movie the kids received for Easter last year. It was "letters to God" and I thought  it would be a good movie for the kids. Turns out the kid dies in the movie at the end from cancer.

This is now the second or third time I have lost the movie choice privilege. The first was for picking  "Faith Like Potatoes" where another kid dies. Then another movie where, you guessed it, another kid dies. At that point Tyler suspended me from choosing Red Box movies because CLEARLY I am not very good at this.

a giant board Sam wants people to sign

Sam keeps watching the movie over and over. I am not sure what the appeal of it was for him. i didn't think he understood the premise of the movie. The little boy writes a letter to God every day, and because of it a TON of people are helped  with super serious problems. What Sam did understand though is that the boy died from Cancer. So now he has an idea.



He wants to raise money for kids with cancer. He made a sign for people to sign and he wants to have a lemonade stand. In just two weeks during the farmer's market next door we will have a lemonade stand. 25cents a cup. we might even have some cupcakes and cookies for sale. So if you just want to make Sam's day stop in  from 12-4 on Sunday 2 weeks from now. I promise I will remind you

Broken

You can see it bubble up  across his body. It only takes a few seconds before the entire thing takes over my soft sweet boy. His little (or no so little anymore) fists clench tight, his calf muscles twitch and he grind his teeth together, all of this happens in seconds. I mean it, just seconds, before whatever is near him goes flying across the room, onto the floor, into the wall or at me. I have been hit by shoes, chairs, and most recently a notebook.

The good thing is I have been doing this long enough that I can usually keep everything safe. The bad news is, even though I try I often cannot keep everyone and everything safe. Either because he is being watched by someone, or because I am not paying enough attention, or sometimes I am just not fast enough. I miss the warning signs one out of every 50 shots or so. Not great odds I guess.

We lost the battle this week when the only real laptop in the house became a casualty. The screen was shattered. I was gone for less than an hour at one of the older children's open house. Less then an hour.

I am so frustrated because he KNOWS better, but he just can't help it. I am frustrated because I KNOW he can't help it but I still get so angry. Sometimes I am so mad I feel like I am going to explode. That won't help anyone. It won't even make me feel better. Then of course I feel guilty for being angry, I have to remind myself that he isn't like everyone else. Isn't that why I get so angry at other people?

Terribly humbling

Sometimes, I don't have the answers.

 What do you do when you don't have the answers? What happens when you can't fix it, when you can't help and there doesn't seem to be a solution? All I know is the question, and it's the same one I always have

"How do I help Sam NOW?"

Third grade is hard. Harder than anything he has ever had to do and for the first time he WANTS to do well with it. He is just so frustrated. He told me today they just learn too much too fast. He also told me that when he gets overwhelmed he stims on his shoes. Sam has never been a huge stim kid, though he does flap and such when he is stressed. I can't help thinking about my poor baby, so stressed at school. I worry that the kids will begin to tease him. Kids are mean, really mean. I remember what it was like being teased and it makes me sad for him. He wants to make friends but it is just so hard for him.

I wish there was a way to unlock his brain some days. Not to make him less autistic, but to make things easier for him. I know he would love to learn if we could just find the way to teach him that doesn't stress him out. I worry that if he continues to be so defiant in class that they will place him out of inclusion and into a contained classroom. He already has a ton of accommodations and modifications to help him through. He gets a ton of love and support from our team. In fact I LOVE his team and I KNOW they will help figure this out.

It could just be growing pains. Between the new school, change of season, new teacher,shorter days, upcoming baby,increased self awareness, and harder work, it may just take him longer to get into the groove.

So for now I am holding my breath every time the phone rings. Hoping and praying it isn't the school.

The Finish Line

This is ten percent luck, twenty percent skill

Fifteen percent concentrated power of will

Five percent pleasure, fifty percent pain

And a hundred percent reason to remember the name!

(fort minor-Remember The Name

Sunday morning was fantastically perfect for a half marathon. I had packed the car the night before with a change of clothes for each child and snacks for them in the morning. I had everything set and ready to roll with at 5:30am when we had to leave. The Team Up! with Autism Speaks Boston 13.1 Half Marathon started at 7 am and the group photo was at 6:40.

I still ended up late after getting turned around and then missing the exit. I got to the race just after 7 am in tears and panicking. I had to pee and that only put me farther behind. 

+When I signed up for this race I had planned on running it and I had not planned on being pregnant.

This race was never about me though, it has always been about supporting Sammy. When I explained to Sammy that I was doing this for autism awareness he asked " So people know kids with awwwtizzm (he always says that word with a weird inflection) aren't just stupid?" Sammy's insight has always astounded me. This whole morning was about him and supporting him and yes, trying not to cry.

 I got there late and I had to hustle to catch up. My oldest boy came with me so I wasn't alone, he is a spectrum kid as well. Sometimes I forget that because he does so well. I had only two goals 

1. finish

2. not make an ass out of myself.

I did the first, not sure about the second. I am often as socially inept as Sammy. I don't like to be around people, I don't read social cues well. I always wonder if people are just humoring me when they  are nice to me.

I caught up about mile marker 3 or so and somewhere around MM4 This Awesome Lady here passed me. I was fine until about MM8 or so then I began to fall apart and my hips began hurting. My legs were almost numb and my hips burned. Then "Remember the Name" came through the i-pod. I saw This blue haired guy running the other way and he waved and it made me feel better... a little. I powered through anyway and just kept going.

It was so amazing to me that every person that had a team up jersey on cheered me on. I gave a thumbs up to every person I saw with one too. I met an amazing momma who ran in a tu-tu and cape, a woman who had a double hip replacement (who finished before I did BTW), another friend Paula, that I met through twitter ran by me. She check on me, made sure I was OK, and offered support.

My beautiful boy Tyler encouraged me and pushed me and made me laugh every time I thought about quitting. He even rubbed my shoulders. I sat down at one point near MM11 and thought about waiting for the sweeper van, but all I could think was SWEEPER NO SWEEPING (thanks Jess). Someone walked by made sure I had water, asked if I was ok and encouraged me. As I came up to end of the course, two other women were walking the other way and gave me hope that I was almost there in the form of an OREO COOKIE. you have no idea how good that freaking Oreo was~!

My family met me just outside the finish line and I crossed it, in tears, at over 3hrs and 35 minutes. 

Why was I crying?

No, it wasn't the amount of pain my body was in. It wasn't hunger, pride, pain or exhaustion, or anything of the sort.

 It was the distinct realization that I was done, I had crossed the finish line...and that Sammy doesn't have a finish line. There is no end of the race for him, every day he gets up he is in it. He doesn't get to just be done. I didn't quit because he can't quit. I didn't stop because he never does, but I crossed the finish line and that is something he will never really do. I was done, and tomorrow Sammy will still wake up and be autistic. He will struggle to get dressed and brush his teeth. He will still loose it every night when it is time for homework. 

I may have finished the race, but my work is not done. For that reason I will be doing this again... after the baby of course. 

not just chub 16.5 weeks pregnant with baby number 6

I did finish

I want to write about this event. I do. I promise I totally will. I still can't seem to wrap my head around everything that went on this weekend. I feel very emotional when I think about it. It could of course just be the pregnancy hormones. I will later today post the pictures and the story. More important than the race, which was so not a race for me, is the people. The thought each of them put behind getting it done and the sheer power of will.

This song got me through mile 8-11 over and over and over...



I want to tell you about being so out of my element I contemplated not showing up.I want to tell you about meeting people I have been following on twitter and feeling like a silly fan girl. I want to tell you about the amazing sense of community I felt, about the runners that stopped to make sure I was ok. I want to tell you about all the amazing people, the tears in my eyes, and my amazing 17 year old son that took every single step with me. I want to tell you about how hard this was and how great it felt. I want to tell you about the oreos...
I am just still too emotional to write too much about it .

Out of my Depth

 The half marathon is today and I am 16.5 weeks pregnant.  I kind of resemble a weeble wobble at this point. I still can't wrap my head around the fact that I got myself into this. What the Hell was I thinking?I am pretty nervous because I have never done anything like this before and I am so out of my depth. I had originally planned on running this half marathon but the pregnancy with squish and severe morning sickness kind of derailed that. I haven't trained the way I would have liked to or as much as I would have liked to and of course that has me worried. Everyone keeps reminding me that I am pregnant and that I should take it easy. Lots of people keep telling me this isn't a good idea. Even Sam says "I don't think I feel good about this, if the babies dies your so busted" OUCH.

My husband has been super supportive, thank God. I understand the concerns as I am CLEARLY out of my depths.

You know what scared me more than the 13.1 miles? The CROWD! I am short of breath just thinking about it. I can't even write about it. There were far less people last night then there will be today and even that was hard.

You know what though? HARD =/= IMPOSSIBLE
It doesn't equal quit or fail or walk away. Someone we were sitting with last night asked "You're STILL going to do it...PREGNANT???" I kind of laughed and then I explained like I have explained to everyone else.

My Son, my sweet fluffy headed boy doesn't get to quit because it's hard

he doesn't get to wake up in the morning and say "You know, this isn't a good idea. I think I will just STOP being autistic." He doesn't get to walk away because something unplanned comes along.

He doesn't get to quit. 

Neither do I.

I am doing this for him, because I want him to know

he isn't alone

he isn't broken

I am doing this because he needs to know

there are so many others like him

that he HAS support

I admire that little boy so very much and because he can't give up

NEITHER CAN I

Derek Hoare 2011

I went to an amazing Pre race dinner tonight. It was my very first autism event. I can't wait to tell everyone about it tomorrow (after the half marathon) I spoke to a few people and told them the story of Ayn. This little girl stole my heart over a year ago. Here is her story





Derek Hoare 2011 ~ this story about a little girl that was removed from her father's care simply because they felt he was overburdened. As a parent of a special needs kids I find this appalling. I want to be sick. The damage and the fear this separation must be causing this father and his daughter AYN (who is super cute BTW) we all know how hard parents of autistic kids have to work to get their children to form bonds. My heart aches for this family. so please. spread the word, increase the pressure, and pray...

There is a facebook page set up  for updates and there is a link to the petition for Ayn as well

Ayn's Facebook Page

In The End

In the end , yesterday turned out OK. The migraine never really went away but you can't win them all.

My mother brought over cake, so I didn't have to make my own. Which is always awesome. Cake which is made for you always tastes better anyway.

My boys made me a card , well Tyler and Sam anyway. They drew birthday cakes, balloons with smiles, and a table set with a bunch of plates.

My husband made dinner. Fish and french fries. I am so grateful I didn't have to cook last night since I felt so sick. In fact I have to say I am pretty blessed with a husband that will do whatever needs to be done. He doesn't even grumble. I know I might if the roles were reversed. I tend to be a cranky pants when it comes to change.

My friends all sang me happy birthday at book club. I got the cutest card  and a gift card to Dunkin too. Oh and a JELLY DOUGHNUT! Those of you on my facebook page know I have been craving them lately.

My wonder hubby also remembered an obscure request I had made earlier for this...

yahooo.

Happy Birthday

Today is my birthday. I will spare you all the details on how old I am. I woke up today to my darling Sammy making me a wonderful breakfast. He even served me breakfast in bed.
How awesome! Of course between him, Nate, and Grace they ate it all but that is fine.He also made me coffee and it was close to perfect! He did forget the spoon but I wouldn't ever say anything.

GF cheese toast and Coffee

He then stepped on a small drop of water in the kitchen. He fell apart, stripped off his clothes and spent the next 40 minutes wailing that his pants were wet. If his pants pants had in fact been wet, or if he had in fact had anything else to wear, I would have let him change. That wasn't the case, unfortunately.


Then this afternoon Sam and Nate got into Tyler's room and dumped an entire bottle of cologne on themselves.
If you have ever been pregnant you know how sensitive your sense of smell becomes. I now have a migraine.

Zombies

I feel like I'm in a fog today. It may simply be because I had to keep Sam home this morning due to a doctors appointment. He did pretty well with the exception of a small battle with Nate in the waiting room.

I sat there watching him for a few minutes this morning. He was sitting in the sunlight of the kitchen eating his breakfast. Nate was chattering on and on as always. Sam was silent, as is often the case.

He began mumbling "not now son, I'm making toast" which we haven't heard in a while. I sat silently watching and realized he was saying one phrase after another to himself. He just kept repeating them.
"Not now son I'm making toast. If your going to eat cake you'll need to use a fork. your cute but I don't understand what your saying. " and so on.

It's been years since I have heard him do this. It had always been a sign of being stressed out.

He looked up at me and asked.. Are Zombies Real?
Tears were welling up in his eyes and he was dead serious. Sam overheard his brothers talking about a zombie Apocalypse and he had no idea they were joking around. Nothing I say can convince him otherwise.

Teaming up with Shell over at Things I Can't Say