Lately, our main focus has been on Naylah's speech. Yet, there is lots to work on such as holding a spoon and self feeding to cruising to walking and sensory issues but the main focus is to make sure she is heard.
She is at the point where she is frustrated because she can't communicate as she wish.
She cries a whole lot because that's the only way she can get immediate attention. As a "mama please I need your focus on me. I can't find my words anywhere so please hold me. Let me get my frustration out.Let me cry out for a few and make sure you see me trying hard."
Honey, don't worry I see it, and I am doing all I can to make your frustration go away. I will become an expert in boards if that's what you need, I'll take an ASL class if it comes to that. Anything for you. You make the impossible possible. You are the proof I have to believe in miracles.
Even by not talking, she has her ways for communicating.
When she is hungry she will make the mouth movement same as she will be eating. ( even by us every time showing her how to sign "eat") it's not enough, she wants more than signs and pictures. I can't blame her, she sees everyone talking and her little eyes get so big by paying attention.
When she achieves something,she claps and wants for you to clap in return.
When she needs a cuddle or some loving she simply leans towards you.
She needs to be picked up her sweet little arms will go up. If She doesn't want anything her body scoop and crawl back.(we call it "moon crawl")
Those are some of the many ways to tells us that she needs something. Her body language is helping a whole lot, to get some of her frustration out.
Signing still an issue because of her hand control ( pointing, finger grasps,...)
She understands lots of what we are telling her. She just can't make herself understand in return with her own words.
Hearing from her specialists that she may never talk... is heart breaking.
She has that inner voice in her, that just wants to come out but can't figure it out how.
I have many wishes for you my darling.
For you to tell me "mama I love you."
Hear you calling my name when you need me.
Whisper sweet words in my ears.
Tell me everything about your day.
Tell me stories, that you would make up.
Tell me silly jokes.
Be able to tell me if you are hurt, happy or sad.
Be able to tell me when something is good or bad.
Be able once in school to tell me, if people are good or bad to you.
Just to tell me anything you wish to.
I wanna hear all about your day and everything fun you learned along the way.
Be able to tell me if you like something or not.
I Just want for you to Be able to communicate with others.
Hear you talk to your imaginary friend.
Be able to yell at mommy when you are upset.
Sign language, board makers, are all so great and with that you will be able to communicate, but it is just not the same.
You know, you have that voice inside of you who just wants to talk.
Try a little harder my love. We got to have you talk.
Let's prove to all those specialists that say you won't speak.
That your determination will get you anywhere you wish.
You already beat so many odds, I'm sure this one can be another.
We will work hard on our ma's, da's, moos and baas. Simpler sounds but too hard for your mouth.
I wish I could tell you speech is overrated and that you don't need it at all. Words can make your imagination go as wild as you want.
It's the greatest of all tools.
With that, You can tell your own story, make sure you are heard and understood.
I want you to be able to tell your journey to others.
Mama gives her version, but I am sure from your point of view it's a whole new story.
Try a little harder, there is a voice inside of you just waiting to come out.
We don't know what makes it so hard for you to speak.
We don't know much about your genetics.
But that inner voice of you just wants to speak.
We know your vocals and ears are clear.
I often sit down and imagine, and I am sure your voice is so sweet.
Mama wants to hear you talk my darling. I need to know when you hurt, sad and I also wants to know what makes you happy and mad.
I want you to beat all odds of your rare genetics, show your specialists you are able to do anything you wish.
We don't need statistics and science, you can beat this challenge.
I see your mouth movements when I am talking but what is making those sounds to stay in?
You have lots to tell and I can tell.
Speak my darling, let the world hear your sweet sounds. Let us hear what you have been wanting to talk about.
I will hope hard for those wishes to come true. I had imagine a whole life for you. Seems like it's all going to an opposite way. By now I thought you would be up and running, telling me "no" for anything I would ask. Asking me "what's that" for everything new you would see. Wonder "why's" for all the things I would tell you.
I can't look too far away, can just take things day by day. I don't know if two years from now you will be in a regular classroom, if I will ever get to pick a prom dress for you. If you will ever be able to speak clearly or just to be an independent person.
It's hard taking an unknown road, not knowing what's waiting for you, but I promise together we will beat all the odds. We will make happen what others said it wouldn't.
I am sure that inner voice of yours will come out and I know it will be the sweetest of all sounds.
I'll dream it, that it will happen, and we will do it all we can for you to get there someday. I just hope this day is not too far away. I just want to take all your pain away.
All the life struggles and make them easy for you. It is just so hard at times to sit and watch all things that comes naturally by age stage such a challenge for you.
You make us all so proud because you do it daily with a smile, while I struggle at times.
You show me, that things are not so bad, because you have all the help you need. You have a whole crowd behind your back, just cheering for you.
" Naylah, mommy knows how much you wanna talk, I'll try my best to make you get there. I am already so proud of how far you came and the sweet person you became. You make this life a challenge. You makes us sit down and wonder what can it be. You make things more interesting. You make mommy fights for anything you may need.
I know there are days, I'm out of answers and can't come up with anything else for things to happen. I know there are days, I feel down because I can't come up with anything to help you out.
There are days I wanna hide and scream. Not because of all the issues you challenge everyday. Just because I am your mom and I should know better what to do. I get mad at myself for not knowing all about you. We all say mothers know best, so why can't I resolve the clue? If I knew what's best, I would just know what to do. I try my best everyday to show you how strong I am. Then when you asleep sometimes I look at you and just wish I knew what to do. I want you to be the person you are meant to be, I don't wish to change you or genetics. You are you who you are suppose to be and there is no one else like you, that's what makes you, YOU.
I want to help you on things I know you want to achieve. Like walking and running, you look at others kids and just want to do the same as they do. Your motivation will get you there, I have no doubt about that.
I want you to speak. More than just hearing "mama I love you", I want you to be able to tell your doctors how your body is feeling. I can only imagine and guess so much, you are the only one at the end to know it all.
I don't know best, it's your body and you the only one who knows best is you. I can only help you out, until we figure it out to get that inner voice inside of you out. Please, darling forgive me for my days of doubts. For the days I am in lack of answers. For the days I wanna hide out. For the days I wanna scream my angers away. You can be as different as you wish that won't change a thing, I just wish to help you out and I get your frustration go away.
I am not asking for miracles and you genetics to all the sudden change. Because that would make you a whole new child. I love you just the way you are. I just wanna be able to help you out."
Inner voice inside that body, my child needs you to come out.
She has so much to tell the world, she has a whole new world to explore.
The only way she can tell her story is if you let that inner voice inside of her speak.
She wants it and she is trying so hard so please let that voice come out.
Speaking or not I am proud of you my child, I am proud to be your mother and every day to stand right by you.
I know you have that wish in you to talk. Let's make that wish possible. Let's beat the odds and facts. Let's make you talking another challenge that you will achieve.
Let's hold hands and face another challenge, let us do what others told us you wouldn't be able to.