WARNING: Momma on a mission: My girl may be Non Verbal, But you bet she can communicate!

   I really want to set the record straight (at least from my momma point of view) on a subject that I have had to advocate repeatedly with my Boo. I was in a conversation today where I was totally at a loss for words as someone clearly had no clue about what they were talking about. The subject: Non-Verbal = No Communication.

    What does Non-Verbal mean?  In many ways, it means different things to different people. For example: To a doctor, it may mean zero to no words written on an evaluation. To a therapist/teacher it means a student for them to teach. To a Momma, it may mean never hearing the audible words 'I Love you'. I could go on.....  however, there is one thing it absolutely does NOT mean. It does not indicate that someone cannot communicate! It gets me every time someone says, 'Oh, she doesn't talk, so how do you know what she wants? Or how do you know she is in pain?' Have you ever heard of body language? Or maybe it's a new theory called 'Momma's Intuition'. Sometimes, when there are no verbal sounds, my girl buries her head in my chest. I know then that she needs me to hold her. She also has this way of rubbing her nose against mine- code for 'I Love You'. What about when she grabs my hand and pulls me to the kitchen and points to the snack that she wants. There are also cues that she is uncomfortable or in pain. I know when she needs to go potty or wants to go play. It's pretty apparent when she is happy or sad.... or just wants to be left alone. Are there times I have no clue? You bet! But every single momma will tell you that they know their child. And when they say something is wrong, you'd better listen! 

    To prove my point even further, my girl is now somewhat verbal. Would the average Joe understand her? Probably not. But those who see her daily know exactly what she verbalizes. Now, when she rubs our noses together, she says, 'I Love You.' When she scissors her legs, she says 'Hurts'. You get my jist. Body language was our first 'words'. She knows how to tell me what she needs me to know. 

  I will never forget, one time registering at the Emergency Room late one night, the nurse, after reading the list of diagnosis asked, 'Is she verbal?'. I said, 'Not to you.' She then responded, 'Are you the primary caregiver.' YES I said. She then told me that she would make sure under no circumstances would we be separated so that I could communicate to them what my girl needed. Now there was someone who understood what this is all about! I was so thankful for that woman. She was truly an angel that night. 

  We all communicate non-verbally, every single one of us! Why are our special kiddos treated like something foreign? These kiddos are in there....just like you and me. They have wants, needs,  are smart, compassionate, loving, scared, happy, sad, excited, playful and most of them have a great sense of humor! You just have to 'talk' their language. Please remember, the next time you see a quieter kiddo, don't write them off. Try to connect and see what beautiful language they are speaking to you. You will be changed for the better! 

   

Hello another beautiful year....no more worry!

    Happy New Year, my friend! What a blessing it is to have another year before us. Usually in the first few weeks of a new year, I think on what might God have for me THIS year. It's never turns out to be what I think in my head. He always is faithful to send something my way that my mind hasn't thought of to be sure that I must rely on His Grace and Strength alone. I look back on 2012 with my jaw on the floor. The ups and downs were probably the largest I've ever seen. I'm still thinking on those and here we go on to 2013.
   I do know that my Savior is doing a work in my heart like none before. You know how you sit and read your devotions, get up, and the first words out of your mouth you need to ask forgiveness for! You pray and meditate, pray and beg, pray and pray and pray for God to change you from the inside out so the He will receive the glory. You are not alone. This Momma struggles daily with every step, every word, every thought being in obedience to Jesus Christ. That includes the daily life and tasks of a special needs momma. He knows the desire of my heart... to stay out of the hospital, to lessen Boo's doctor appointment load, her therapy load, her med list. Jesus and I have had numerous conversations about this. He has promised me that HE KNOWS. He knows me. He knows our girl. He knows our house. He knows the past. He knows the future.... and He is there. He tells us in Philippians to 'be anxious for nothing'. POSITIVELY NOTHING! We aren't even supposed to worry about what we will eat tomorrow, because He is there and knows exactly what we will need. All He asks of us is to trust Him completely. And you know what? He already knows that we will fail. That we will say 'sorry, lets try this again'. I wish I could convey to you that after walking with Him for almost 18 years, the peace that is settling into my soul is supernatural. It's the peace that is spoken of in Philippians that 'surpasses all understanding.'
  My God is capable of completely healing Boo. I know that with one single word from His Throne, she could be healed. There are days I am on my knees for this. Then I realize, Boo is Boo. Why would I want to change her. Yes, I long for her to be pain free, to not to be held captive in her little body. But do you know what she is doing? She is pointing others to God. Thru her suffering, her sweet spirit, her determination, her bravery, her peace. God is supplying her with huge amounts of grace, peace, and strength so that SHE is a vessel for honor. She comes in contact with so many doctors, therapists, teachers, etc. They are all aware she has defied the odds of living....pointing them to her Almighty Creator. Our Boo has great reward in heaven. One day, when we are there, I am sure that I will be blown away by this hero of the faith that has been given to me as a daughter.
  So this year, I pray for all of our special needs kiddos who have been Created Beautifully Special. God has a plan. A plan to show His love to those all around. I pray for us Momma's... that we will be aiding these vessels as we ourselves dedicate to walk with the Lord each step of this journey. That is the only way to do it and remain at peace. Otherwise, we look like a chicken with our head cut off.... and the sensory kiddos really don't like that! =)

Here's to you. Here's to me. Here's to this new year being Created Beautifully Special in Him.


 

Our Christmas Tree

Recently, I have been reading a couple of Inspirational Christian Authors with my devotions. (aka Elizabeth Elliott and MaryBeth Chapman) LOVE BOTH OF THEM! It puts a different perspective on the way I look at life. Man... we live in a broken world! So screwed up! But that doesn't meant that we have to live life in that fashion! So I was pondering things tonight as I putting up our 'Charlie Brown' Christmas Tree as my hubby says....

 I thought, 'I wonder what Jesus is thinking about my tree.... is it pointing others to Him? Can I teach my children about HIS birthday simply from our Christmas Tree?' He then began opening my eyes to the beautiful truth sitting in our Family Room. Now granted... these are items that I have collected since we got married. The Lord graciously showed me how HE orchestrated this amazing tree. 
First, it is done with Candy Canes, Stars, and Snowflakes in Red, White and Gold. 

Candy Canes~ Are for the shepherds staff as they kept watch over the flocks by night when the Angel appeared to them announcing Baby Jesus birth.(Luke 2:8)
Stars~ are what the wisemen followed to see their King. (Matthew 2)

Red~ is for His blood that was shed on calvary. (John 3:16)
White~ represents the promise of hope as we will be arrayed in fine white linen when He returns for us, His Bride. (Rev. !9)
Gold~ reminds us that these trials are but light afflictions as He knows the way that we take and is transforming us into Gold. (Job 23:10)
Snowflakes~ Every day, He washes us, cleanses us and sees us as clean as freshly fallen snow...when we are faithful to confess and ask for forgiveness. (1 John 1:9)

If our precious. loving, merciful God can plan out my little Christmas Tree from multiple trips to the Dollar Store over 8 Christmases to show the entire reason HE came to earth, then I must trust Him for everything in my life. He will be faithful. He is the omnipotent King who Reigns at every second of every day and one day, the King that EVERY SINGLE KNEE WILL BOW BEFORE. Yes, that is the Savior who died for you and for me and lives inside the heart of every believer. Pretty Amazing. This Christmas, make it about Him... there is nothing better than Him and only Him!

He is the One who CREATED EACH of us to be BEAUTIFULLY SPECIAL. You won't regret having Him as the best gift ever! 

Anyone still here?!

Wowsers Momma's! Long time, no write! How I miss writing. It really is a sweet time for this Momma to reflect.
 A lot has happened in the last few months! New docs, new jobs, new church, new twists and turns. But through it all, my Savior has been by my side. You know, one thing that always brings tears to my eyes is that even tho I fail Him time after time, He NEVER leaves or lets me go. Pretty amazing, Huh?
  So, Hello again. I am back. I am here. I am ready to go on this journey together knowing that we are all Created Beautifully Special in His image.

'Excuse Me. What did you just say?'

     Have you ever noticed when you are out and about, as you listen to conversations, that there are mommas 'wanting' their children to be diagnosed with some sort of disorder? It completely boggles my mind to hear individuals say they 'hope' that someone will say little Johnny has autism, or that something would get them a 'handicapped sticker', with a crass sort of giggle, because it's ridiculous  at how far away they had to park. Being in medical offices during doctors appointments and therapies have left me with no shortage of these jaw dropping admissions that I hear caregivers say very flippantly. 
  
Dear Momma...
      (sitting across the room from me, too busy texting on your phone to realize that your child, who you think needs a diagnosis, is running outside into the parking lot WITH your keys in hand),  


    I don't know what world you live in and what you think, but the special needs journey with my girl has been no free ride by any stretch of the imagination. Let me tell you about what it's really like to have these diagnosis. 
   You see, more than likely, you will never get just ONE diagnosis. In our 6 short years on this path, we are at 20 diagnosis and still going. In truth, while the diagnosis is just a term, it is for life. There is a slim-to-none possibility that you will get a year into this lifestyle, decide its not much fun, and ask for them to 'remove' it. Living the life 24/7 will prove what you are made of in each aspect of your life. Your life as your 'own' diminishes the moment you give birth to any child, but when you become the primary caregiver of a special needs child, you can kiss any minute of 'freedom' good-bye. Why you ask? Because there are medical issues every single minute that you breathe. You are always waiting for a straw to break and land you in the hospital for days on end. Imagine a list of meds and administration times longer than your grocery list every day. Instead of calling your friends, you are calling the doctors, sometimes hourly and around the clock. Think about not being able to 'go out' because you need to save that gas in the car for your next emergency trip to the hospital, not to mention, there is no one who is trained, able, and/or willing to take over your duties to give you an hour to even sleep. Picture handing your child over for tests and surgeries to complete strangers while you sit and watch the clock move at a snails pace, not knowing if they will wake up the same lil person as when they fell asleep. And sleep... That is almost non-existent. Seriously. I am not exaggerating like some may say.
      This is no cake walk. This is not for the faint of heart. However, any momma called to this journey can and will do it, because there is no choice. You give everything you have to make sure your child is happy and healthy... Whatever the cost. 
    Maybe you have seen the looks that we fellow special needs momma's give each other. I will tell you, it's true, there is a sisterhood that is beyond words. We all walk the halls of the hospital, the grocery store, and the school the same way. We look, hoping to meet the eyes of a momma who really understands. A fellow friend of heart who knows our fears, the pain, but also the triumphs and victories that will be won. We rarely say any words, but it's a bond. It's real. It's there. It's amazing. 
   I hope  you understand that there are plenty of days I wish for my girl to be healed, to not have any pain, and to be able to just be a kid. That being said, I wouldn't trade her for anything! She is perfect because she is an unbelievable gift granted to her dad and I. I love her so much. She is a warrior and my hero. I am immensely blessed. So, dear Momma, before you wish anything upon yourself that you don't really understand, I would advise you to step back, love on that kiddo of yours, and count the blessings you don't even realize you have. Because truthfully, we all have so much to be grateful for and the grass only SEEMS greener on the other side. 
   
 Blessings,
    From a Momma who cares <3

Bullying and The Special Needs Momma~Take 2

   Sorry if there was confusion today. I posted earlier, then retracted my post. Not because I didn't stand behind it, but because I was warned about others who took the same stance as I did, and were sued in court and investigated by CPS. This blog is is not more important than my kids whatsoever! Therefore, I chose to delete.
   It really gets under my skin. People discriminate against our special needs kiddos all the time yet we don't have the right to stand up and say ,'Hey! This isn't right', without the fear of being taken to court! After observing, researching, and looking into the issue of bullying, my jaw is continually on the floor.
   Statistics show that nearly 90% of special needs students are bullied or mistreated by their peers. NINETY PERCENT! Chances are, that in our lifetime, our child will experience bullying. Truth of the matter is, in our society, we all will be bullied at one time or another.
    Today, I have been boiling! Usually I take the 'kill them with kindness' approach. However, those have not been my sentiments as I look upon the world in which we live. Then tonight, as I was doing the dishes, something 'dawned' (no pun intended =D) on me. Instead of letting all of my frustration spew out on to you, creating a domino effect so that we all become this mob, carrying lighted torches and pitchforks, what if we take a different approach.
  How would I feel if my kiddos were sitting next to me, listening to me rant and rave to the people who I strongly dislike. Now, I'm not saying not to stand up for what you believe in, but to look at which the manner it is handled. If my children see me 'acting' like a bully, how do you think they will treat a person who they disagree with? Do you think they will pull out of thin air, 'Oh, I should let this person know my feelings in a calm, rational way'? No. They will remember Momma and her little temper tantrum to the lady who wouldn't listen! Momma's, we are the ones responsible for growing bullies. Now, take that with a grain of salt. Each of us has the opportunity to make this world a better place each day. Are we instilling that quality in our kids? Even when people are mean to us. How do we encourage them to treat others? I know that my anger is justified. I know the people that I am contact with are wrong. But two wrongs don't make a right....it just fuels the flames.
   My challenge to all of us is this. We are only here for a short time. Being a Momma is the most privileged, overwhelming, beautiful job there is. You have the ability to shape other human beings. How you react every minute of the day in front of your children will mold their little brains. They will more than likely do what you do..... especially if it's negative. Gotta love the 'mini-me's' on all of your failures!
   What if we started raising a generation that silences bullies. Not because our kids are louder, but because they are human beings that care about others. Bullies are mean to get an ego power trip. Why do these individuals need a power trip? Probably because at some point, someone has told them they are worthless, a nobody, a failure. How often do you praise your children? Tell them you love them? Show them that no matter what, you are there for them?
  We have the power to change the world, one person at a time. Maybe, just maybe, the special needs community could lead the way in showing those who do the bullying are the ones that truly need the help. Not our kids who are climbing mountains everyday.
  Now...to just put this into practice the next time someone treats my child as though she isn't worth their time or effort because she has different struggles than the 'normal' kid. Really? My child has medical issues that make her a warrior. Bullies..... they have challenges that probably are harder to overcome than anything my girl faces. It truly is a sad situation that so many find themselves in. Let's focus on growing people who can make a difference in this world....starting with you and me.
   This journey is not easy, and there are people that will make it more difficult just because they can. But let's remember the kids that we are fighting for. Look in to their eyes, soak up their love, and make them proud. After all, they are little angels that have changed our lives....for the better.
   Here's to you...my friend.

Stress and the Special Needs Momma

       Have you ever had one of those moments where your mouth falls open and you have to pick your jaw up off the floor? I had that very thing happen today. While I was having a rare 'spa moment'...let me clarify...I was at the chiropractor to have my neck put back in to place, my doctor, who I've seen for 15 years, says to me, 'You have stress in your life, don't you?'. I replied, 'Maybe a little.....'. He was pulling my chain. He knows what my life as a special needs parent consists of. Apparently, the areas in my body that were showing the most signs of needing attention were my neck, shoulders and head. Cue the tension headache. That leads me to address this area of 'stress' in our lives. Every single person has it. Let me make myself loud and clear. I know that the entire human race, special needs parent or typical parent, carries quite a load. Here, I want to focus on us special needs parents. To cover all the areas, lets break it down into sections.
     First stop, Physical Stress. There are so many different ways that we have to care for our kiddos. Everything from lifting, changing diapers, dressing, bathing, feedings, giving meds, fighting sensory meltdowns, learning new medical treatments, daily therapy regimens, extra laundry, countless appointments, hospital stays, the average 2-4 hours of sleep every night for years on end....and the list goes on. Our bodies show the wear and tear of this schedule being repeated day in and day out. It's inevitable! However, the duties that incur stress don't stop here.
    Let's move on to the Mental Stress. Please tell me I am not the only one whose brain NEVER stops. The thoughts at 1am.... 'I need to call Neurology in the morning to make sure that the Physical Medicine doc knows what the Developmental Pediatrician said yesterday.', 'I need to get that script moving for the Occupational Therapy.', 'Oh dear God, another surgery? Guess I should start taking care of....'. The 'To Do' list go on and on and on. We live and breathe the medical terms, diagnosis, meds, reactions, new docs, etc. We do things we don't even know we do! We are subconsciously watching every single move, breath, swallow, and diaper, because at any given moment, we will be thrown for another loop, be in the Emergency Room, and the doctor will want to know the minute by minute detail of the last 24 hours. That includes what our child does while sleeping.....
    How about the Emotional Stress? Yes, I will admit, I do cry in the shower. I try very hard to contain it there, because I don't want Boo to think I'm upset about her. Sometimes though, Momma needs a good cry. Let's face it, we are talking about life-threatening situations not just every now and then, but daily. Whether it's a serious medical crisis or a sensory meltdown that propels your child to run from you in the parking lot, your emotions and body are always on guard. Add in what other people think about what you are doing.... you might as well call it a day!
    Anyone have Marital Stress? First off, let me say that I absolutely adore my husband. I married the man because I not only love him, but I like the person he is. Yet, I am so drained by the time I get alone with him, that I come across grumpy and short because the only thing running through my mind is, 'Get me to my pillow so I can get just a little sleep'. In our 6 years of being parents, we have been alone maybe 4 nights. Usually, once we are completely alone, we zonk out! We are both so drained from the day in and day out of special needs caregiving, that we snuggle down in and saw logs! There are some areas that we try to do daily, weekly, monthly...  We try to laugh a little and tell each other, 'I Love You' every day. To know that even in the midst of this craziness, we are still important to the other. At night, when all is quiet... at 10p or 12a, we sit on the couch and snuggle to a comedic tv show. Something that takes our brains to a lighter level. We are working very hard at trying to get one meal a month, just the 2 of us. No kids, just the 2 of us on a ummmm....what is that? A DATE! Yes! Sorry, I still get butterflies.
    If you are like me, you also have other children who need a Momma too! They are just as important and need to be held, listened to, and encouraged. When the heck to you have time to clean, do laundry, grocery shop, weed the flower beds......my time is usually between 9:30p and 2a. When I want to be with my hubby or sleeping. See, you are not alone!!!!! It is a seemingly impossible situation that we live in!
   I want to take a second to chat with those of you who are on the outside looking in. Maybe you are a grandparent or a friend to someone who has a special little kiddo. I hear often that people don't know how to help or what to do. Listen to me loud and clear. It's little things that mean the world to us. Drop off a meal, but be sure to know if there are adjusted diets. Offer to come and clean the toilet, mop the floor, make the beds, fold some laundry, any little quick job that helps us 'feel' better. Give an hour of your time for whatever we may need. Send a card of encouragement. Call and see if there are some grocery items that need picked up. Run thru Starbucks and get Momma her favorite drink...odds are, we haven't had one in ages. Realize that we may not be able to talk on the phone due to our daily routine, but we thrive on adult conversations. Stop by, and just chat about something besides medical terms. We are still people on the inside that are getting buried by this life we live. In stopping by, please don't judge our house, appearance, or expect us to wait on you hand and foot. Our world never stops, so those around us need to be willing to hop on the 'treadmill' and walk a mile in our shoes. Most of us have no life outside of Special Needs. That is the truth. We are not ignoring you. We are simply immersed into giving our child(ren) the most normal life possible. Things that  the world takes for granted. Please, be understanding and for a moment, learn what it's like and put yourself in our position. We need you like you need us.
     Momma's, my doctor reminded me today, what we have all heard a million times. You can't give to those around you unless you have given to yourself. He encouraged me to take 5 minutes a day to recharge. Close your eyes and breathe. Read a chapter in a book. Pray. Paint your nails. Listen to a song. You have read those articles that talk about our stress levels being comparable to combat soldiers, right? Shaving somewhere between 5-15 years off of our life expectancy. You are worth this. Your family needs you. Start right now. Give yourself some air and remember, that you have been Created BEAUTIFULLY Special.