“Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be.”
― Shel Silverstein

  As a parent of a child with special needs for only a short time I have already encountered those that discount our Sam's capabilities.  If you have a child with special needs you have encountered this also, if you have not yet..unfortunately you will.  I found the quote above and I say it to myself, I read it when I am discouraged and I say it to my sweet boy.  Together we will experience those that will discount our abilities and the abilities of our children and we must push it aside.  We must know that at the end of the day our child's diagnosis does not define them, that the assessment they just received is not final, not always correct and not all encompassing.   We must know that we have a powerful, loving and sovereign God that can make ANYTHING be for our children.  We, as parents, are our child's most powerful voice and influence and although Sam has never used his voice to speak to me, I see the love on his face and the fight in his eyes.  His eyes say to me, thank you for fighting for me, loving me and always believing that I am capable.  If you are sitting there and reading this in a dark and discouraged place, please know that you are not alone, stop reading those developmental checklist e-mails, utilize the "unsubscribe" feature on your facebook page if it makes you breakdown to read about how your friends kid is talking, walking, pretending...whatever! You can check in on them when you feel ready. Surround yourself with positive things for your child.  Focus on each day one at a time, find a community that appreciates your child's accomplishments and can say "me too", this is just as important as giving your child the therapy they need! I promise you, I was lost until I found my community and I will always owe them a GREAT debt.  Remember, Anything can be for your child and have hope in your heart.

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HOPElights<3

Diary of a Mom

Hopeful Parents

HOPElights Support Group

Love for Autism

Autism Speaks Family Services

Autism Support Network

Deep Breath

Pulling tugging yelling squealing jumping pushing crying running screaming falling touching hugging.... 
(Deep breath)
"What do you want?"
Strained and close to tears
I'm sweating trying to hold in my anger
Just a child..my child..our child.I shake my fist to God in my head..
screaming out from the inside
Why? Why did you take his words?
Don't say, don't let them know sometimes you hate it
That Autism is a dirty word
A hated fool..an unwelcome chain on my child
Don't break down
Don't give up
Don't lose hope
One day you'll hear "mama"
One day you'll hear "I love you"
We will beat this
He will beat this
I will never leave him
Never hurt him
(Deep Breath)
Come here, let me hold you sweet boy
I will pull you
The wild things can't have you!
I am here waiting
Here waiting for you
Here waiting for you
Here waiting for.......you.
(Deep breath)



This is a Poem that I wrote to describe the dark side of autism for me. We have days like this that are difficult and frustrating but we also have so many other days that are beautiful, happy, encouraging and in both cases full of God. Even when I want to ask God why and shake my fist at him, he loves me and he has a plan for Sam and our family. I think it is SO important to grieve, to cry, to feel anger and frustration, to say it isn't fair and then take a deep breath and move on. Autism isn't always pretty and I wish that Sam didn't have to struggle with it, so we will fight it, always and I will love him always. I will feel lucky that Sam just has autism, I will feel lucky that I simply have my Sam. So I extend these words to those that live here in this place with us..to those that feel alone or discouraged. It's okay to feel angry and cry..so do it, but don't forget to see the good you have and most of all NEVER forget to fight and to breath..the exhale is coming.

Sam, King of all wild things

Don't Forget To See Me

"I don't want pity. To pity me is to make me a victim. I want understanding. To understand me is to love me as an equal. I don't want tolerance. If I am tolerated, I am disliked in some way. I want respect as a fellow striving child of God - an equal in his eyes. I don't want acceptance. To accept me is to graciously grant me the favor of your company. To accept me is to marginalize me with the assumption that I am less than you. I am your peer. I am neither above you nor below you." - Mitch Mayne

As I sit and write, I see my Sam; my beautiful and loving little boy with silky soft brown hair, dimples on his face and those multicolored eyes sparkling back at me...how fitting that they are multicolored.  

Our Sam When he was a little guy

 

I have grown accustomed to not hearing our Sam talk, but instead feeling the tug of his little boy hand at mine, when he needs my attention.  When I look to him, I see this little insistent and stubborn stare on his face,that says: "Mama, get up !". The slight raise of his eyebrows and the hint of irritation that passes over his brow when I'm not fast of enough, is just SO adorable.  When he is tired, his eyelids look heavy, his little hands run across my arms and he sleepily tugs my head to his tiny chest and kisses my hair softly.   In these moments I feel his strength as he has the ability to comfort me, to say to me I don't need words to say "I love you Mama",  and you don't need to HEAR me SAY it.   After all, it is much the same as how God loves us.  I have never HEARD God's voice but I am so absolutely certain of his love for me.  

I had the urge to write about understanding today.  To write to those that don't live in autism town, or special needsville. Here are 3 simple things that in my opinion would help any family that has a child with autism.

1. Get rid of the "Cancer Face"

When they tell you that they have a child with autism, pay special attention to your face.  Take care to not look at them as if they just told you that their child has cancer.  Autism is not a life threatening disease, it is a disorder in which absolute hope, healing and happiness can be found for a child on the spectrum. 

 2. Understand that just because I have a child with autism, does not mean it is my job to educate you.

Don't assume that a person that has a child with autism wants to go over all of the warning signs with you, educate you on what autism is, or hear how glad you are that your kid doesn't have it.   The person you are talking to may have just had their child diagnosed and you may be the first person that they have cautiously decided to openly talk with about it.  In the beginning of our journey,  I cannot begin to explain how fragile I felt and how hard I had to fight the tears at even the sight or sound of the word autism.  It has taken me nearly 2 years for the will to fight for my child to finally grow larger than my willingness to be sad.  The will to fight was there from the second I knew our Sam had autism, and I began immediately to do everything in my power to help him,  but it was hand in hand with the grief and sadness that I felt.  I am so grateful that I am in such a strong and happy place and that I can help others to have a better understanding but I don't feel that way every day.  Many days I just want to go about my business, I just want to feel like any other Mom, I just want to say to someone that Sam is shy and that's why he isn't talking and ignore that inquisitive look on someone's face.  That's my right, just as it's your right to discuss or not discuss the challenges or accomplishments of your child.  

3. Take the time to consider that the kid that's screaming, throwing themselves onto the floor and having a tantrum, isn't just being a brat.

In other words stop and think before you shake your head and give that Mom a dirty look that says "you need to control your child".  Live in a place outside of the ignorance.  There are 1 in 110 Mom's that have a child with autism and 1 in 70 of us that have a son with autism..cut us some slack.  # 3 for me is mainly to the lady (another parent, not an employee) at Jumpstreet the other day.  She gave us the evil eye, while shaking her head at me, when Sam threw himself onto the floor, whining and crying because a crowd of kids came in and he became overwhelmed.  He wasn't being a brat Mam', he was struggling with autism. 

All of this being said, I have encountered many kind, understanding and thoughtful strangers.  To the Dad in the play area at chick fila on Macarthur, Thanks for letting my kid repeatedly try to climb on your back for a piggy back ride, verbally stim "eeeeeeeeeeeeeeeeee" right in your face, and for not helping him open the door as he tried to get you to let him out.  Yes I was standing right there with him, pulling him away from you, but all kids get annoying sometimes right?  Thanks for seeing him just as he is, a silly & sweet little boy and for not giving me the "cancer face", when I explained that he had autism, but for sharing with me instead that your friends son has autism too, and leaving it at that.   Thank you to the multiple therapists and doctors that have taken the time to educate yourself and for choosing to UNDERSTAND and not simply "tolerate" our child.  Believe me there are many in the medical community that live in the ignorance, and I am grateful for those of you that do not. 

I want to spend the latter part of this post with thanking our family.  I truly need you all to know that your support and willingness to understand has not gone unnoticed.  I never for a moment take it for granted, because I know many that do not have the support of their families and I am SO blessed that I do not have the displeasure of knowing that feeling. 

From the moment Sam was diagnosed with autism you all have went above and beyond to show your love and support for him and for Jonny and I. 

This is for you:

From my baby sister Aimee in response to an e-mail from me 2 days after Sam's diagnosis;

Mamee & Sam

 

Tiff,
 I read up on some of the websites you told me, and I will continue to stay educated on Sam's diagnosis. I want you to be able to talk to me and also don't want to be someone in your surroundings that is ignorant and says things that might be insulting because of not understanding the circumstance. Of course, this is not something that makes me look at Sam differently, He is perfect.. he is a handsome, super sweet, funny, smart,adorable..little boy( I could have listed a lot more). I don't mean to say this like you don't know, i mean to say I'm not someone that gets caught up in words, because of a diagnosis, its not a label. I already know Sam and absolutely love everything about him, including the things he does differently, & i know you feel the same. I just want you to know i embrace this and want to be there for y'all, I know you must be overwhelmed right now with the thought of all the therapy and new experiences to come. I have told you this before but i absolutely would not trust  anyone else to care for my nephew, you are absolutely a perfect mother, and you should have tons confidence for that. You are definitely going to be the person i trust for advice for my own child one day. Your very strong, and i pray pray for you and Sam through all of this.
I love you.
-Mamee-

Mamee, I want you to know how much this e-mail meant to me then and how much it still means to me.  I just couldn't possibly think more of you or love you more than I do, you are such a phenomenal person, friend and sister inside and out. Thank you.

 

Momma, thank you for being on the other end of the phone when I began this journey heartbroken, showing Myself, Sam & Jonny love and support and continuing to do so every day.  God couldn't have possibly given me a better Mom and best friend.  You are a beautiful soul, I admire your strength and your giving and kind heart.. this quote just says it all:

My Momma & Sam

 

"Oh, the comfort, the inexpressible comfort of
feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keep what is worth keeping, and with a breath of kindness blow the rest away." ~Dinah Craik

Thank you for always being my safe place, I love you so.

To Nena, Thank you for telling me that Sam couldn't have a better Mom.  Although our "text message" talks are brief, I have always known that you care and that you love us.  We love you too and you are an amazing Mother to Landon and Riley.  I have always admired the strength and courage you have always had. You have worked for and deserve every ounce of happiness that you have.  I am so incredibly proud that you're my sister.  

My sister Nena with my nephew Landon & a Baby Sam

 

 

For Daddy & Angie...where do I begin?   The thoughtful help planning birthday parties, making (awesome) birthday cakes, text messages to check on us, phone calls, uplifting conversations, willingness to spread awareness for Sam, seeing the pride in your words and on your faces when you talk about him and just loving, understanding and caring for all of us.  THANK YOU. Your compassion, love and understanding has never gone unnoticed and has never been taken for granted.  We love you both and just so you know we go to your picture and ask Sam to show us Pawpaw's beard and his little face lights up as he points it out. He also will hand us a picture of his Gigi when we ask him who you are.  He loves you both so much and I am so grateful that neither of you need his words to know that. 

Sam and his Papaw reading his favorite book

Sam with his Gigi

 

For Jenn,  even though you have never met Sam physically...I know he feels your presence.  I talk to you when I have a moment of brokenness..a moment where I wish I could call and ask for your advice and I know that you hear me. I look forward to our visits in my dreams.  I know that you watch over us and love us and one day we will meet again. I love you and miss you so.

 

"Your absence has gone through me Like thread through a needle. Everything I do is stitched with its color."-- W S Merwin

For my big sister..I wish with everything that you were still here.
Jennifer Christen 'Page' Moseley
12/23/80-04/17/07

 For Mary, God couldn't have given me a better best friend.  Thank you for always being there, listening, understanding and loving me in spite of my flaws.  You are an amazing mother and I am so beyond lucky to have you in my life.  This is for you:

My Best friend Mary & A 7-month old Sam

 

"When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares." ~Henri Nouwen

For Paula & Dave, Thank you for your continued desire to build a relationship with Sam in the midst of me literally not letting anyone ever babysit him :), HA!.  There is such love in persistence. Thank you for helping us when we felt we couldn't find a way and for taking the time to learn and understand Sam and the affect of autism on his life.  We love you both so much.  I will never know what it's like to have "bad in-laws"  You guys are both amazing, and Sam couldn't have a better Grammy & Poppy.  We love you.

Sam & his Poppy

A brand new Sam & his Grammy

 

For Heaven & Robert I am lucky to have you both as a sister & brother-in-law,  and grateful to have other parents that understand what it's like to have a child with special needs, in my family.  The faith in God that you both have, the example that you give by being a wonderful mother and father, husband and wife are all truly inspiring to me to daily have a stronger marriage, be a better parent and Christian.  Thank you for that example, you are truly special to us all. 

Sam & His Auntie Heaven

 

For Mandi & Joe,  over the past 13 years that I have gotten to know you both I have seen how much you love us and your family.  I hate that sometimes the only phone call we make to you guys are when one of us has a broken down car and we need Joe to come to the rescue.  We both lead such busy lives, but you are both always in my thoughts.   Mandi, thank you for taking the time to call and talk with me after our camping trip, and letting me know that you cared to have a bigger relationship with Sam.  I need to let go a little and give you guys the chance to get to know Sam more.  Don't feel alone in this though lol, everyone knows I never let anyone babysit Sam..but you guys aren't just anyone you're his family and I am grateful to have you in my life. 

Sam & Auntie M

 

Thank you to my Mamaw in Louisiana for always offering up words full of faith, hope, love & endless encouragement, I admire you for all of your strength and courage.  I haven't been through even half of the hardship that you have, and here you are standing tall.  Your courage and strength is everything that I aspire to find. I love you so much.  For my Papaw Buck, your part of the reason Sam is named Sam.  Like Jenn I know that you and Uncle Mo are looking down on us, loving us and one day we will all meet again.  I miss you both terribly and love you so much. 

Sam, myself & my Mamaw

Me & My Papaw Buck

Me & My Uncle Mo

 

To my Mammaw & Pappaw, thank you for loving and accepting the mountain that is the Page kids,  a few granddogs and grandkids and for giving us Angie. You are all a blessing in our lives.  You are both incredible, and we love you.

Sam & Pappaw

My Mammaw

 

To Memaw & Papaw Page, thank you for exemplifying what a grandparent is and going above and beyond that.  You have been steadfast in our lives from the moment we were born and a true example of what love means in a family.  Thank you for loving us in the way you do and always offering kind words of encouragement and love towards Sam and our family.  You have made a lasting impression on all of our lives.  We are so lucky to have you both. 

Papaw Page with Sam

My Memaw with Sam

 

Thank you to my friends and fellow parents in the autism community for creating a place of warmth and understanding, this is a quote from A Diary Of A Mom and I believe it says it all:

"and so it is that within the heart of this place i dwell - this magical place where solidarity crowds out solitude and love ushers judgement to the door. this place of warmth and freedom and sacred understanding - where passersby say, 'me too' and no one ever has to explain. this place where the good times are sweeter for the sharing and the hard ones more bearable for knowing we are not alone. this place we've built, brick by brick - all of us together. our place. our community. our home. i am so grateful for this place."

-A Diary Of A Mom

Thank you to the other countless supportive friends and family that I have not mentioned, each and everyone of you make a difference in my life.

Thank you all for being that Place of comfort for Jonny, Sam and I.  We couldn't possibly ask for better.

 

Hope

Today I've heard the word hope a lot. Maybe it's because I needed to hear it, to feel it. Some days are filled with guilt over whether or not I'm doing enough, is Sam at the right place, does he have enough therapy? Is there something that I should be trying that would help him more? Why doesn't he talk? I have random moments where I just start crying. I need the tears sometimes to push-on...to say "I'm not ever going to stop fighting for you". The tears allow me to feel the hurt over the loss of the life that my child should have had. Those random moments allow me to feel pissed-off about it, to feel the bleak and ugly unfairness of it all and to say to God "I am angry at you."  I also must, in the same day, thank God.  To embrace the fact that I am glad for the life my child has, because believe me I am SO incredibly lucky to have him.   Each day I must look Sam in the face, tears or not..with or without words, and say "WE'VE got this" and to ALWAYS remind myself that Autism will never have us..even on the days where I feel it has swallowed us whole.   I will always know that because of the challenges our boy faces, my love for him will be that much more intense and that we will become stronger than we ever knew we could be. So, autism, be warned..we will never go down without a fight..in fact..we will never go down at all.

"It's his favorite"

Some time ago I wrote a post about how the book "Where The Wild Things Are" represented Sam's journey with autism to me.  Since then my Sam has chosen this as his favorite book.  When I say favorite, I mean to say that he eats with his book, he sleeps with his book, he rides in the car with his book, he carries his book to therapy 5 days a week, he plays with toys on top of his book, he looks at other books on top of his book.   If Sam is upset we can recite his book to him and he calms immediately, if you say any random line in his book he will immediately find the page.   It's his favorite.