Happy Halloween!

I just wanted to wish everyone a Happy Halloween. I really do hope everything goes well for everyone. As much as Mason loves Halloween, it is always a little difficult due to his sensory issues. Costumes that work for him are HARD to find, but I think we had good find this year with a pair of Skeleton pajamas from Gymboree. Mason really enjoys the Halloween carnivals, though there is no way on Earth he will do the face-painting. The kid can't handle stickers or even bandaids, so face painting never happens. I'm hoping one day he'll be willing to try it. But if not.....no biggie. I've got bigger things to worry about. He loves the candy he gets and he loves to watch other children in their costumes, but he is not a big fan of dressing up. Last year I think he enjoyed opening the door for Trick-or-Treaters even more than actually going Trick-or-Treating himself. Every time the doorbell rang, he'd run to the door and flap his hands as he anticipated the "Trick-or-Treat". He was also known to yell "Trick-or-Treat" back to the kids at the door. They always look very surprised--like they're not quite sure what to do. It's kinda funny. He loves books about Halloween and Halloween decorations, but he is not so fond of spooky Halloween music, scary costumes, or flashing strobelights. He's happy to go Trick-or-Treating at the local Trunk-or-Treat, but TONS of kids and people around is hard for Mason. Even though it is hard, he usually pushes himself through it for the candy. This kid will do anything for candy. Carving pumpkins is always a favorite, but he absolutely refuses to touch the guts. So.....mom cleans it out while Mason watches. When it's ready to carve he draws the face where he wants it, then he watches as I cut on the lines he drew. It is a good system that he seems to enjoy being a part of. He's very proud of his pumpkin this year. I think it is partly because he got to go to the pumpkin patch and choose it. Once we got home, he never wanted to let it out of his sight. Anyway, I really just wanted to wish everyone a Happy Halloween. I hope your kids are happy and your day is fun!

Hi girls,

I want to share with you a post from the blog of another special needs mom.  Her name is Suzanne.  She has two beautiful daughters who both have complex 1 mitochondrial disease.  It is a progressive disease that has no cure.  I have been following her blog for several months, and have been absolutely inspired by her heartfelt words.  

With all of our recent talk of the "my child is different" feeling, she was so sweet to give me permission  to share this with you.  A big thanks to you Suzanne!  I have read it over and over, and it touches me every time.  I hope you'll take the time to visit her blog yourself at www.specialneedsmom.com   She promises to update it again soon.  I think you'll all relate to it and enjoy her talent for writing like I have.

-Tiptoe Mama 

Dear Little One,

Things are not always as they seem.

We were at the park the other day, you and I, and your big sister too.  She is four, only a year older than you, but she can run and jump and climb.  And you, completely in love with her, always laugh and clap- and share her joy.  Maybe you imagine yourself traveling in her fluid body instead of resting on your own flat feet, managing your weak muscles that prevent you from walking independently. 

On this day we can see the playground ahead, and your sister begins to run.  My hands are on your waist, supporting your steps with a solid strength that enables you to shuffle your feet into an awkward yet productive gait.  You are impatient; there are probably hundreds of tiny footsteps between you and your sister.  You reach your arms up asking for help.  You want me to carry you.  I refuse the voice in my heart and I say "no".  I take your hands in mine and we begin the slow walk together.

Finally when we arrive at the playground, you want to climb.  I hold your waist, your arms and sometimes just your hand to stabilize you as you move carefully up the steps.  A little boy, almost half your size walks by you, too close - his body briefly making contact.  It is enough to challenge your balance and you begin to fall.  My hand quickly pulls you upright to the stance you had worked so hard to establish.

Your hands in my hands, you lead me climbing clumsily to the top of the slide.  I place you in my lap.  You begin to scream loudly and I see the boy's mother studying you and me.  Your sister waits below, calling encouragement, anticipating the excitement of your accomplishment.  We push off the top of the slide and you are crying in fear as you always do.  And five feet later as we reach the bottom I hold you in front of me and you laugh!  We are closer to the boy's mother now, and we make eye contact.  Before I can even consider conversation she asks "How old is she?"  "Almost three", I reply..."And your boy?" She answers that he has just turned one, a few months back.  She abandons the conversation, afraid and unable to ask the obvious questions.  She turns her head and her eyes follow her son instead. 

You see, little one...things are not always as they seem.  When you are tired and I help you walk, when your weaker muscles need the support of my strength, or when I carry you, you may cling to me.  You may even be restless or fussy.  Others may see your physical size, your neediness and think I am indulging you.  But things are not always as them seem.  I know your needs.

Sometimes, you may cry or scream in public.  It is because I am challenging you.  Expecting you to act like other children as we move through public life socially as a family.  Others may see a tantrum; I know your special needs. 

And when you move your body, quickly, repetitively, distracting or disturbing those around us, they may see immaturity, disruptive behavior.  But I know you are adapting to the challenges of your environment the best that you can.  I know your special needs.  

Love, Mommy

 

Primary Program

It's been a long day..don't we all have those? Today was the Primary program in sacrament and to be honest I wasn't too nervous because my two children involved had been reciting their lines over and over at home. My son got up to say his line and put his tie over his face and refused to say the line. He just kept shaking his head no. Everyone thought it was cute and giggled, but something inside of me broke a little. After the song everyone sat down and he stood there next to the front, not moving. One by one his classmates tried to get him to sit down and finally he did, into the arms of his teacher. She rocked him through the rest of the meeting on her lap. Bless that sister. I had tears streaming down by the end of the meeting because it was one of those "my child is different" moments. My daughter did well until the end, she came off the stand sobbing. "I missed you up there" We couldn't get her to calm down so we ended up leaving church instead of giving a talk in Primary. It's the first time we have left early in years. I know the Lord sees our hearts and knows His children. One day at a time.

Phew! The Party is Over!

Marshall did NOT have fun at his party. He kept having HUGE meltdowns over and over and over again!!!!! It got so bad that I had to remove him from the room and put him in my bedroom with my poor sick hubby. He bit his brother and threw a rock at his friend. Every year I have done a birthday party for him and every year he seems to get more and more angry!!!! So here is my new plan. NO MORE BIRTHDAY PARTIES! Maybe we will have our cousins come over to play but that is it. Why put him through the misery??? He slept really poorly last night so maybe that has something to do with it. I'm not sure. I just know he's been agitated all day. He has been screaming at Nathan over every tiny thing. He's also been crying that his bum hurts. He always says that but lately he's been saying it more and more. I will take him to the doctor next week to see if he can help me figure out why Marshall is hurting. I have no clue. Maybe he's just extremely over sensitive right now. Is it just me, or do his behaviors just scream Autism?

Two Birthdays

Friday was Marshall's birthday. He is FOUR!! WOW! I can't believe he's four already. Time flies. As difficult as life is with him, I would NEVER want it any different. I'm glad he is part of our family. I never realized just how close we came to losing him at birth but thanks to some nurses, his life was saved. Phew! He was the 1st person to wish me Happy Birthday 4 years ago. My birthday is today. I'm 34 now. I'll have to keep reminding myself of that fact because I keep forgetting it's actually my birthday.

Here's my boy once they got him stabilized. I think this was taken by my Dad on Oct. 25, 2004.

He's doing better in this picture. He's breathing on his own but still has the IV in his head. It's hard to really get a grasp for how little he was. These pictures don't do it justice. Just think about how small those green Soothie pacifiers are. It looks gigantic on him!!

This was taken a few months after Marshall was born. He's sitting with his cousin who is only 3 weeks older than him.

Which feet do you think belong to Marshall? Notice the cord up the middle of the 2 babies? He was still on an apnea monitor.

Here's the birthday boy yesterday. His brother gave him a Curious George monkey and he LOVES it!

Hi All

I thought I would get on really quick. I haven't posted anything for a while because there isn't anything really to talk about. Bree Anne is doing so great in PT/OT and has started speech... We are working on signing she is doing really well in that also.
I have been reading all of your posts, I hope you are all doing well or better at least. I don't know any of you in person, but I can tell that you are all so sweet and loving. Difficult times make us stronger... as hard as they may seem. Keep up the awesome Mommy work... Your kids love you for it even if they can't/don't/ wont show it! That is so hard for me to remember sometimes, but it really is true!

What Helped Me Tonight

I just wanted to share the lyrics to this song by Cheri Call. I was listening without totally listening but somehow the words got through to me.

Only the Brokenhearted
(Cherie Call)

Who can hear your sorrow?
Who can listen right?
Who can tell you stars shine through
The darkest and the longest lonely night?
Only the brokenhearted can
Who can feel the fire?
Who can taste the rain?
Who can laugh till tears fall?
Who can know your pain and take your hand?
Only the brokenhearted can

How are you gonna take a stand?
How are you gonna hear the band?
How are you gonna love the sunlight
If those precious summer days never had to end
You have to learn like only the brokenhearted can

Broken hearts are deeper;
They've been open wide
And the tears become containers
To hold more love inside
And truly feel what only the brokenhearted can
If you need a shoulder, bow your head and pray
He'll wrap you like a blanket
With love to face the day
Because He knows like only the brokenhearted can

How are you gonna comprehend
Love that has no end?
Why'd you ever have to leave Eden
If you were never truly meant to understand?
You had to live like only the brokenhearted can

Who can love you deepest?
Who can hold you tight?
Who can tell you stars shine
Through the darkest lonely night?
You know I can
Like only the brokenhearted can
The brokenhearted can
The brokenhearted can

All songs ©2001 MendonHouse Music (ASCAP), except "He Gives Flowers to Everyone" and "Where Faith Lives", ©2001 MendonHouse Music and Diamond Aire Music (ASCAP)