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.


 

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.
   
 

The Eyes That Stare....Stare......STARE.

   How do you react to the stares? The looks? The eyeballs piercing your very heart? Recently, I have had several occasions where I have been undone...almost to tears in public places.

      Example ONE: I remember, our last hospitalization, Boo and I were taking a walk. This was not an easy task mind you. We had the IV pole, the NG tube, and were on 'poo watch' from all the meds they were pumping her with. Not to mention her regular balance and vision issues. We didn't ever go far. Just enough to escape the room. We were moseying down a hallway and almost everyone we passed would look at us with those pained eyes, and I could hear them whisper, 'oh, that poor baby! Wonder what is wrong with her?', 'What a shame.' I felt angry and sad at the same time. Angry because these individuals were gawking at my child like some show. They could not stop staring. Sad because it was MY baby that people were dabbing their eyes over. Not one of them noticed that she was singing and smiling, they just noticed all the tubes and wires...yet she was happy to be out of her room walking and taking in the sights.
     
     EXAMPLE TWO: We were at the zoo a few weeks ago. A specifically bad day for Boo. She is getting to be a big girl, but for sensory reasons, she needed to be in the Graco stroller. It is clear that she has out grown the thing, but it was all we had. I was pushing her around. People were staring. I would try to get her as close to the exhibits as possible, since she has poor vision, and people would crowd in front of her with children who clearly needed some lessons in being polite. One lady literally pushed me out of the way and got in front. Then something happened. I had backed up and was sitting on a bench with Boo...trying to de-stress both of us when a Momma and a girl, about the same age as Boo, came into the exhibit. Both of them were wearing tshirts that clearly stated the 'diagnosis' that this family was battling but also advocating for. The waters of people parted, and the two of them were ushered to the front. My mouth dropped open! My first thought was, 'I need to get me some shirts!'. Followed quickly by, 'Wow, no one is even taking the time to look at us, because they would see that my girl needs assistance. NOT STARES, but just a little extra grace from the common people.' That sight has not left my brain.

   EXAMPLE THREE: We were at the mall shortly after Christmas exchanging an item. There were TONS of people, a huge amount of noise, lights, smells...you name it. I could see that this was not going to go as I had hoped. I knew this. However, daddy didn't have as much experience as this Momma. I kept saying that we needed to be extremely quick and may have to leave. He insisted we would all be fine. Told me to take a deep breath...which I did. He soon started to catch a glimpse when we were in the Apple Store and Boo threw a wireless mouse. Umm Yeah. Start activating evacuation route before we become 'buyers' instead of 'window shoppers'. I gave my the hubby the 'listen to me NOW' look. By the time we were leaving the store, Boo was into high pitched, blood curling scream. Out into the main area, I start pulling out my usual disaster aid. None of it is working one bit. People are fleeing from our little seating area with huffs and puffs, like we are interrupting their yoga sessions. Let me add...I am having a spa party myself with trying to hold a child that is 40 lbs, but might as well be 150lbs with all of the adrenaline flowing thru her veins! Daddy is now telling me to 'do something'. Usually, we are a really great team. But at that moment, I'm thinking, 'What do you THINK I am attempting to do?!' The crowd around us is growing. The STARES are piercing. I say, 'We need out of here pronto!' So Daddy grabs the other 2 kiddos and I clutch tightly to Boo. We hit  the escalator and Boo says, 'No Momma'. I calmly let her know that as soon as we are up that thing, we are outta here! She wouldn't have it though. Before I could blink my eyes, she bolted in the opposite direction. At that moment, my Momma Tiger jumps into action, (all 5 feet of me), and I catch her, throw her over my shoulder and start running up the escalator. I keep repeating, 'You are doing this Boo, You are doing this, We are almost there.' I turn around to see where the rest of my pack is and I see my hubby, holding our 2 others kids, with tears in his eyes. He has gotten the picture. The heartbreaking things that our girl deals with daily. His heart is crushed. I then start to tear up, but find out that should I continue doing so, Boo and I will not make it to the door because we will be in a heap on the floor. The instant we get into the fresh, outside air, I set her down. The others join us. We are all completely drained. Boo looks at Daddy and says, 'Sorry about that Hun', and gives him a huge hug. At that moment,  I knew the sensory meltdown was for a greater good. Daddy wasn't  just hearing about anymore, he had experienced  it. The 'Mall Trip' has forever changed his view on a few things...to me, that is priceless.

    All of us SN Momma's endure stares. It is a topic of conversations frequently. How do you deal with it? I know there are some families that give out business cards to 'starers'. Some have a little saying that they say quickly as they are leaving. I am still formulating my plan. The business cards seem like an interesting idea, because you can advocate with out saying a 'word'. God knows that if I started, I wouldn't shut up!

   To the STARING CROWD. Good lands, give us a break. We are not a freak show. We are not here for your entertainment. We are parents trying to help our children survive this world. According to the  Sensory Processing Disorder Working Group of Ben-Sasson 2009, 1 in 6 children suffer from a form of SPD that is due to a medical condition. Chances are, you will see a meltdown in progress.Your snide comments of, 'That child needs a good spanking' or 'That parent needs to get control of her' are NOT appreciated!!!! There are so many medical diagnosis that make it difficult for our kiddos to adapt to the outside world. Do you realize that on the inside, our children are just like you and me.
     In a good moment of clarity, my little girl will ask why YOU were starting at her? For your info, I do know what I'm doing. I spend more hours trying to communicate with my child than you do at your desk job. I will never get a vacation, because this is a life long process. And Yes, I would give my life for this child that I love with an unconditional love. I am not going to 'send' her away for treatment. I was hand picked by the Creator Himself to be her Momma and that's what I will do til the day I die. So the next time you feel like being an onlooker to a kiddo who is just trying to tell her Momma what she needs in a different fashion than you are used to, please, be a gem and put the eyeballs back in your head and be on your way. Maybe on your way by, offer a word of encouragement, because in our world, the STARES are all too common, and the 'Keep up the good work' is almost never heard.

   My last thought is each of us need to remember is no matter what the battle is we are facing, that we are Created BEAUTIFULLY Special and should treat others with the same respect. If you don't like little eyes staring at you while you are picking your nose, eating your dinner, or making a phone call, chances are, others don't appreciate the audience either.

  My fellow Momma's. Keep up the great work. You got this....don't ever give up. You were given this calling. Respond with everything you have inside of you. The paybacks are out of this world!

Blessings<3

You Are Not Alone

      Do you ever have a day when you think you aren't gonna beat this? THIS... the special needs life. The overwhelming and never ending appointments, phone calls, paperwork, meetings. That's not even the 'real' work. Let us not forget the little kiddo who holds our Momma's heart. The one that we attempt to move heaven and earth for!!!!
     I truly try to be an optimistic person. I attempt to see things from multiple points of view. But there are some days that I really want to let people have it! For example, the ladies who stare at my child in the store while my girl is experiencing a sensory meltdown or the insurance company that loses my documents and acts like its an inconvenience to wait on ME to send it again. Let's not forget the school administrators who don't even have kids, let alone deal with the special needs kiddos, IEP's, ETR's..... and should be removed from their position. Am I the only one who has family members that are positive they can handle the entire situation better and are waiting for you to screw up bad enough that they may actually get a shot? Today is one of those days....don't you dare cross me.
    I don't want this post to be 'Oh poor pitiful me'. I want this 'therapy writing' of mine to let you know that you aren't alone on this journey. When you feel like you are isolated, tired, and have no more to give, remember there is a sisterhood all over the world fighting tooth and nail to make sure that their child is receiving the best possible care. When you are up in the middle of the night, contemplating another ER run and dreading that you won't get the treatment needed, you are not alone. The next time you get punched in the gut with another impending diagnosis, treatment, or daily living adjustment, you are not alone. When you head to the shower for the first time in 3 days only to melt into a puddle of tears, you are not alone.
   I know I may catch some grief about 'Well at least your child is still living'. Yes. I am very grateful to be able to hold my 'Boo' everyday. But I am being honest. Being a Momma is just about the hardest job out there...if not the hardest. You add special needs to the mix and let me tell you, there is never a moment when your mind stops. That continual mindset will wear your body down. I am so weary of people looking at our community and telling us to suck it up! Really? We are not complaining. We are simply stating that this is hard and we are imperfect. As much as we would like to think we are 'SuperMomma's'....(and we are to an extent)... we aren't invincible. We need help. We need support. We need to know that we aren't alone.
   I wish I could look each of you in the eye and tell you 'YOU ARE NOT ALONE'. As you walk this path, keep your chin up, and don't be afraid to admit the truth...whatever that is. Today, it may be that you need help with certain tasks. Tomorrow,  you may need to look in the mirror and tell yourself that you are doing a great job. Whatever the day brings, I encourage you to send this message to each fellow SN Momma you know :

YOU ARE NOT ALONE.

Wishing you a moment of peace as you read this and the knowledge that a heart beats the same as yours, in this sisterhood 'Created BEAUTIFULLY Special'.