Feathers in the Sun

We have an old down comforter someone gave to us years ago when they bought a new one. It's probably about 8 or 9 years old. It's soft and worn and so very cozy. It's also quite old.
It has a small tear that I tied together with a hair tie until I could get to it. It also has a bunch of smaller holes now because the cat loves to play on it and chase the poofs.

The kids were all in my bed the other day. I was so tired because Evangeline had a rough night. I wanted the kids to go play, or go to sleep, or go to college. or something!

then I saw it.

I giant fluffy feather. It was high above Grace and Evie and it was softly falling down. The sun danced over the small wisps of feather edge and it made me smile.

Suddenly those babies couldn't be small long enough. We blew that feather around and caught it and giggled.

I felt like I was right where I wanted to be and I wanted to stop time. I was so overcome with pride and joy for the life I have.

It isn't easy here. Most days it isn't even fun. But we are working on it. Even if it takes a feather in the sun to remind me

TRIUMPH

I hate to admit it. I am a yeller.

I yell when something scares me. I yell when I am angry.
I yell when I am frustrated. I yell when I am being ignored.

It's terrible really.

and my kids tune me out.

I was starting to really worry that maybe I missed something with Nate until yesterday. I was ready to yell and I stopped. I got eye level with him and explained it to him. Without frustration or impatience.
I watched it click.

So today I banished yelling.

I prayed hard before my feet even hit the floor. I knew I was undertaking a HUGE thing. I didn't allow myself  to say " I can't"

I showed up and gave my kids every ounce of what I want them to give me.


I DID IT!
One whole day without yelling. (though at the end of the day I may have spoken a little louder than need be when Sammy hurt Evangeline by playing to rough)
But I am calling it a win.

Praise God.
Today I had the grace to make it happen. I will make tomorrow the same.

Birthday!

Sam is 9 now. It's so hard to believe that time has flown by like this. It's been 6 years since his DX and he has made amazing strides!

He wanted pancakes for breakfast and so he got that. I made him some special pancakes. He was pleased.
He wanted meatloaf for dinner, stuffed with cheese, and covered in a bacon blanket.

yes that is bacon weave 

My mom made him a cake because Nanni makes the better frosting.

We left that same night for his trip to the cabin.
More on that tomorrow.

Bad Parents

I aim to be gentle with my children. I try to listen to what they say before I react. No good comes from jumping off the mountain and assuming the worst. Right? Well today Nate lost it. he just started crying over something and was so upset and angry he turned all red in the face. I laughed because it caught me off guard. This of course made him feel like I was laughing at him and that made him even more upset.
Instead of being the mother I ry to be, I lost my temper and sent him up to his room. The exact stuff I try to avoid.
It all worked out ok.


My Dearest Nate,

 You are often such a perplexing ball of boy stuffs. You are so full of life, energy, love, excitement, and emotion. Sometime I know I am too hard on you and your 6 year old self. I pray every day that I am not creating damage in your being. I love you so my little butter bean. I need to remember to look through your eyes more often like I did today when you were so sad about the lobsters. Your tiny heart ripped apart because you were so excited.

My dear boy you feel everything so acutely. You and Sammy find joy and love in the simplest of things. Rocks, sticks, bugs, and plants all bring you so much joy. I love watching you seek out everything you love.

I love your power and strength to do as you see fit. The confidence in which you seek the world astounds me because I am often too meek. you may handsome little boy are a force to be reckoned with.

I hope I have taught you that everything around you is a gift from God and deserves to be treasured. I understand your anger when others do not understand you. I appreciate you child and your ability to stand for the truth. You make me so proud.

I have watched you every single day of your life, never missing one day. I am amazed by who you are and what you have become. I cannot imagine how incredible an adult you will be. I am inspired by the carefulness in which you accomplish things. You are such a gift to me.

I know today was tough and I tried to help you gently, because its your tomorrow I am shaping. There is no room for cruelty and anger here. Just love , my sweet boy. I am sorry I yelled and sent you to your room when all you really needed was an extra hug and reassurance. You did not deserve that from me. you deserved to have your trust in me honored. I could promise not to ever make that mistake again but we both know it might happen.
You forgave me easily and snuggled beside me and our hearts healed together.
You are the epitome of love my young son and I am so very proud of you. Keep up the good work.

I have watched you the last few days and weeks finding your own self and dictating more of who you are to the world around you. Allow me to keep up with you darling boy and together we will get where we are going. I want to hold your hand and be beside you. I may not know all the answers but I do know some. Trust me as you learn to trust yourself.

Love,
Momma

When Your Rainbow Baby Brings a Storm

For those of you that don't know what a rainbow baby is.

A "rainbow baby" is a baby that is born following a miscarriage or still birth.

In the real world, a beautiful and bright rainbow follows a storm and gives hope of things getting better. The rainbow is more appreciated having just experienced the storm in comparison.

The storm (pregnancy loss) has already happened and nothing can change that experience. Storm-clouds might still be overhead as the family continue to cope with the loss, but something colorful and bright has emerged from the darkness and misery.

"We lost our last pregnancy, but now we have a rainbow baby."

~Urban Dictionary~

Sammy was my rainbow baby though I had never heard that phrase before. Rainbow babies are supposed to bring closure and joy and peace. He brought those things simply because he was a baby. He was born during an extremely tumultuous time in my life. there wasn't much peace about me. I also had not come to terms yet with Loosing Emma and so I never felt that relief other people might have. It doesn't help either that I lost Emma on the same day that Samuel was born.

Sam is a thunder storm in the making. He rumbles like thunder in the distance and often strikes like lightning. The storm rages in him some days as he rumbles by. It's over almost before it began.
No amount of discipline will ever change that. Nothing I can do controls the storm in him. He is simply, himself.

He has been particularly difficult this summer. Part hormones and part dis-regulation. He has been next to impossible.We are waiting for a therapist for him. I can't help but love this kid though Freak outs and all. It can get ugly here. As bad as it can be, he still hugs me and snuggles in. He squeezes me tight and asks why I smell so good. He also calls me names when he is angry. It can be maddening. While I can't change the autistic parts of him (and honestly I am not sure I would if I could) I do wish it was easier for him. I do wish life wasn't so much work for him. I do wish he was happier in his own skin. I spend hours up at night worried about the choices we make. Until you have had your own Special Needs child you can't possible understand what it is like to parent one, worry about one, love one, fear one and settle one.

He was supposed to be my rainbow baby. So what do you do when your Rainbow baby also brings a storm of his own?

WIN!

Every year Sammy has a party and no one comes. Every year he doesn't get to invite friends because I drop the ball and forget to send out invites to people for him. This year it might be different. If no one comes it might make me sad though.  This year I remembered to send invites to ESY with him. YAY

I WIN

Being autistic isn't easy for Sam. there are so many people who just don't get it. People are ignorant and think that because they see it from the outside , they know better.  While there are so many people in the world like that I try to just ignore the stupidity. I smile and speak calmly and walk away. Because, those of us in the trenches know differently, don't we.

It's hard for Sammy to make friends but it seems we have hit the proverbial jackpot with this homeschool group we have joined. Two specific boys, both spectrum kids, and a mom who really gets it. What a blessing. Sam also made a friend at ESY this year.

It seems that this year he might truly have friends at his birthday party.

I am so excited I can hardly stand it. I hope they come.

Who I am not...

I may not be your idea of perfection.
    I am more lumpy then I used to be. My hair holds more silver in some places than the deep dark brown of my childhood. I may not wear name brand clothes or shoes, or be thin and fit and in style.

I may not be your idea of the perfect family with all our rowdy, excitable, full of life and sometimes unruly children. You may not agree with the way that I parent. You may not agree with my Catholic Faith or my very firm Pro-life beliefs.

Guess what.
I don' really care because it isn't about you anymore. Years ago it might have been. The whisperers in the store, the sideways glances, the raised eyebrows. It was just so foreign to me to see the judgement on people's faces or hear about their whispers behind my back. I was never raised that way.

I am finally at the point where I feel happy with who I am because I stopped looking through your eyes. I still have my moments when the tears burn hotter than a coal from the fireplace. I still have moments when I too wish I had that perfect house, perfect car, and perfect family appearance. There are times when I long for easy and simple.

But I made a choice years ago to trust God completely with our family in every way. Not too long ago in a moment born of sheer frustration and fear and anxiety I caught a glimpse of myself through my children's eyes. It broke my heart.

I was angry. I was trying to force them to be something that none of us are because I was still looking through your eyes. The eyes of the judgmental that don't understand who we really are. I saw our family through eyes of outside, unloving, unfair, and unkind judgement. My children deserve more than that from me.

Because I love them. Because I have been blessed with their keeping.
Because I started seeing myself through the eyes of my babies.

To them I am soft and warm. I am the arms that hold them and snuggle them to sleep. To them I am nourishment, love, peace, and hope. To them, I am the eyes they will see the future through. To my babies (even the older ones) I am home, I am their refuge. My unconditional love helps me to teach them about God's unconditional and unwavering love.

So I am done fighting your idea of who we SHOULD be.
The only judgments I am concerned about are God's alone.

No Click

I keep forgetting to grab my camera when I go out. So many missed opportunities for great pictures. I haven't posted much because things have been a little more up in the air here than usual. We have some house guests and while they have been wonderful, it's still a change.

We have had lots of fun too!

We had a pool party! A friend of ours from church invited the entire family over to play in the pool. Remember when Sam was afraid of the water?  He isn't anymore! In fact he has been difficult to get out of the water. He even went in without a giant life vest! This is the THIRD time in 2 weeks he has gone in a pool and enjoyed himself.

Some of the kids and I went off to a farm and learned about carrots. yes, carrots. We had a blast!

Then we all went to a playground with everyone but Tyler. I gave some of the kids a great lesson in what boogers are made of. It was a homeschool group meet up and it was a blast. The kids ran until they were ready to fall over. The information about the meeting talked about a big red slide. I thought , OK a big slide. I saw what I thought they were talking about and didn't think much of it.

Then I looked over at Samuel and Nate running for the break in the trees. I squinted a bit and notices stairs... and THIS

They weren't kidding about the slide. It was GINOURMOUS! The kids were using cardboard to make themselves go even faster! We enjoyed food and some great people.

Our house guests had their kids visit yesterday and sleep over (8 kids in one place) and it was great. I do enjoy all the different personalities.

Today I did laundry to make up for playing hookey all day yesterday.

Anyone want to help me put it all away?

ESY fail

Sammy's bus picks him up at 8 and on Tuesday (day 2 of ESY) I woke up late. Guess what time? Yup 8am. It was certainly a gift that everyone slept in but not so great that he missed his bus on a day we were going to a party at the beach. He decided he certainly wanted to go to school and got in the car but by the time we were ready there wasn't much time left for program so I kept him home and off he the beach we went. We had a magical time together. Sam made friends and so
it was a fail for me but a total WIN for Sammy

ESY~ starts tomorrow!

Tomorrow Sam starts his ESY program. I am so excited for him... and me.
It's been a rough week. Sam has decided it's fun to do the exact opposite of everything I say right now. It's infuriating to say the very least. We have a lot going on right now and i think that might be part of it. The change in routine and everything else may just be too much for him.

I am at a loss as to how to handle it.
I welcome your suggestions!

Rainy Day Anyway

We dropped the ball for Nate this year and didn't plan a birthday party in May, it was instead at the end of June (a month late). I planned it with his kindergarten graduation party. The day was simply designed to help him feel special. he is sometimes lost in the shuffle. Evie is the baby, Grace is the first girl, Sam is special needs... and then there is Nate.

Nate can be hard to take for some. He comes across as a strong willed child that doesn't care to listen. In fact he is a very excitable, enthusiastic child who needs a little extra time to process. He is super sensitive and  he can be very head strong. He has a wonderful personality once you get to know him. I really enjoy our days together. He can be such a ray of sunshine.

 We invited his friends from last years HS co-op play group. I love these people. They see Nate as the wonderful boy he is, they enjoy his company, and they don't judge his behavior by the same standard other people often do. The see his drive to explore as a wonderful thing and it makes my heart happy. It makes me less stressed and helps to show me he isn't actually being naughty a lot of the time. Nate can totally be himself. There are only a handful of people outside of this group that don't judge Nate,(or me) and we adore spending days with them too!

The day started out drizzly but I figured the rain would stop. We got there (the local beach) and we set up. It down poured and we all huddled under the pop up cover.

The kids were wet and cold and not happy. It looked like it was going to be a short party and that made so sad for Nate.

We hurried up and did his cake so we could let people leave without being sad. Some of the kids just played in the big water puddle beside our table. I took a second to ask God to please help me to make sure Nate wasn't disappointed.

Suddenly the rain stopped and though the sun wasn't out the kids were less miserable. We decided to go check out the ocean waves.

There was a big piddle near the beach entrance and the kids were thrilled with it!. They played in the puddle, played on the beach, and jumped the waves. The Sun ended up coming out and it turned out to be the best party ever for Nate and was exactly what I had hoped for him.

PRAYERS ANSWERED

Poor Sammy

Sammy has poison ivy. He found a cool looking vine, ripped it off the wall, and wrapped himself in it. He looked like something from Lord of the Flies. My darling husband noticed it first and was very shocked. You see we were at the farmer's market across from our house and Sam was "playing" with the neighborhood girls. They keep a close eye on him and they are always sure to let me know when he gets out of line. I want his childhood to be as normal as I can make it. I don't ever want autism to be an excuse for him to not do something he is capable of. Because, he is so capable.

So we washed Sammy down hoping that he would not be sensitive to poison ivy. My oldest son can play with it and never get a bubble.

Sam was not so lucky. It is everywhere.He is very uncomfortable and there isn't much we can do. We gave him steroids a few years back for croup and he was almost hospitalized for a severe reaction. We can't give him Benadryl because he has a paradoxyl reaction and becomes jittery and hyper. We settled on a liquid Claritin and it seems to be helping, just not enough. he has woken every night this week in tears because he is so uncomfortable.
It is everywhere and his body is reacting to it and causing hives on top of it.

But, he has learned never to touch poison ivy again. He can now identify it and he is aware of it.

Sometimes lessons can be painful and hard to overcome.

It had me comparing this to a lot of different things in my life. Change is hard and sometimes the result can be brutal. We learn one way or another and it isn't always the easy way.
I am grateful to have my faith to turn to when things don't make sense. It's the "liquid Claritin" my body needs and while it may not always take away the entire sting of the heartbreak (because I am still human after all) it helps to give me rest.

So while there are a few things weighing on me right now I know that this too shall pass. Until then I'll take my medicine and stay close to my Faith.

Field Day 2013

Today Sammy had field day. His temporary school location is beside a giant park. I love the location with the exception of the nightmare that is parking for events.

Today was field day and I took Nate, Grace, and Evie with some help from Tyler to cheer on Sammy and have lunch with him. His friends all sat with us for lunch and I really enjoyed their company. We all played Simon Says and talked about the weaknesses of different Super Heroes.

It was really beautiful ( by my standards) and I enjoyed the warm. I wore Evie and brought our umbrella stroller for Grace. Nate was super well behaved and so was Grace. They played on the playground with Tyler while I hung out with Sam and his friends for a bit. They came and watched some of the games and it was just a great time.

The para that worked with Sammy on the MCAS this year came over to make sure I knew how proud of him she was. She told me that he dd a great job and really worked to the best of his ability and then some. It's nice to hear good news sometimes.

Team sports are hard for Sammy. I can still see how difficult it is when I look at some of the photos. you know the ones where he is facing the opposite direction everyone else is, or when he just looks confused. Then Something awesome happened while he played hockey. He got into the thick fof things and shot the puck 3 or four times. It was so cool. in fact I was so excited I forgot to take a picture. he also shot 2 baskets!


So much has changed in the last few years. This is Sam and the little neighbor girl a few years back

and this is them now.

Time flies doesn't it

This is Hard

This is hard. Parenting a child with a disability is hard. there is no real way around that. It's hard, and sometimes, it sucks. No sugar coating it.

Like when you are at church with your 8 year old in the crying room because he just can't contain himself.
When that same 8 year old tells you he hates you and says mean things because he is just a mess over not finding his favorite shoes that morning. When the entire day is a  never ending series of blow ups, explosions, walking on eggshells, and teetering on the edge because of those damn shoes. When you begin to feel like maybe, just maybe, God made a mistake giving this child to you because , seriously, You are not equipped         in any way for this. When you find the shoe in the most ridiculous place and for a second fantasize about beating the teen that put it there, with the shoe. When you loose your cool, and scream and cry as though you have truly lost your mind... Those days suck. Those days are hard.There is so much else going on and so many other kids that need your attention too.When you haven't taken a family vacation in years because money is so tight.  The stress of taking your son somewhere unfamiliar is just too much. Because , after all this time you STILL worry what people think.

It's hard. No doubt about it.

but THIS ( possible trigger warning) and THIS (possible trigger warning)
makes my heart hurt in ways I can't possibly explain.

Because as much as it sucks he s still my boy. I still love him with an incredible fierceness. Despite the days I just don't wanna... I do
Because tomorrow the sun comes up. It isn't the end of the world
No matter how bad it seems

Because, once, at 14 I really thought there was no way out but a bunch of pills. Because clinical depression CAN happen and does happen even at 14. Even when people around you don't get it and think you should be happy. Maybe someday I will tell that story.



Even if it feels like no one cares... someone, somewhere does.
Even if you think it is bigger than you... it isn't bigger than two
My faith get me through those days now. By the Grace of God I make it through those days into tomorrow

I Love You

Sam has a new stim.
I see him doing it almost all the time. In places that we are quiet (church, stores, and school) he makes it a soft breathy sound. When he is alone or outside he does it and he is loud. It's constant. When he is watching TV or playing video games. he's very good at being discreet around his friends. I worry about what that kind of control might cost him. I worry that he is afraid to be himself and be OK.

I wish my boy had a world that understood him. Where people didn't say things like "see He showed empathy , he can't be autistic" or " he seems fine to me"
I want him to be in a place that people defend him and love him. I am grateful because our team does that for him. The kids in his class don't understand. They tease him for his weird behaviors, foods, and clothes choices. They tease him at lunch for his allergies and get mad that they cannot bring the snacks they want to.
But, Our TEAM stands up for him. The school Nurse goes in and talks to the kids about how serious allergies are to protect Sam and kids like him. His principle cheers him on when he makes the right choice. She returns my calls every time.

it's because of these people  working with Sam every day that I think we hit this next milestone ....


Those of you that read know how hard it is for Sam to say he loves me will understand how awesome this new development is.

He keeps repeating it to me,over and over again.
He sounds like he means it.
He hugs me every time he says it

In light of the chaos here I am amazed. It almost makes up for his new stim of sudden yelling in short bursts...

GRADUATION PICTURES

I promise at some point I will stop with all this. Soon. Just not yet.

And so it begins...

Tyler and Emily

Some of the family

How Grace passed the time

The principle , Mr. Dempsey

Ready to go

So happy the day is here. He seriously smiled almost the whole time

Listening closely to the names being called. We received a letter telling us there were no alterations allowed to the cap and gown allowed. Tyler braided his tassel to be different

My graduate after receiving his diploma

Two People that gave Tyler all of the professional building blocks he needed and tolerated him leaving his things behind almost every day

Three generations of Aggie.  

So very proud of my handsome boy

Yes, I am licking his cheek. He thinks it's funny to lick me when I'm not looking. This was my revenge.

His girlfriend, Emily, performing her "Vader move"