Monday, September 12, 2016

Loving A Child Who Cannot Speak

I have a daughter and she is nonverbal. It is one of the most difficult portions of my life. When the tears fall it becomes a guessing game. When we miss the mark of the needs the tears become screams. The frustration that mounts for everyone is intense. That screaming can last for what feels like an eternity. What ends it? Her resignation. She has no choice but to quit. Nobody is answering her need. Because we don't even know what it is.

Imagine all of your needs every single day and now imagine that you can never, not even once, tell one single person what you need. What a horrifying thing. Those dreams where you are being chased and you are scared and you try to scream for help but nothing comes out of your throat? That is her world. And we, as her parents, watch on in sheer pain and frustration. Just sign it!!! Just try to say something. Anything.

And she does. Every single day this brave soul yells out, makes sounds, tries. Not a single day goes by when she doesn't try. And her trying? It shatters me. I am her Mama after all and mamas makes things better. Don't we? Is there anything else that better describes what we do? We kiss bruises and skinned knees. We are the makers of magic and all wounds are healed by our touch.


But Me? I.can't.fix.this. 

I can't wipe away this pain for her. And the sheer terror I face every day at the thought that she can't tell me what is wrong, who hurt her, what makes her happy and that I will get it wrong is something that breaks away pieces of me every single day. 

Am I failing? No. I am not. 

Is she failing? No. Never.

It is what it is.

But you need to know how this hurts. There are people in your life who are going through this never ending grief. And they have learned how to blend in. They know how to disappear when they can't blend in and after a few times you stop noticing their absence. But they don't. They wear the guilt of escaping on their shoulders. The isolation adds to their pain. But they simply cannot take one more raised eyebrow from a stranger. Every day they are at the brink of breaking. So give them grace. 



Imagine sending your child to school or church and hoping and praying that nothing goes wrong. Imagine the stress of knowing that if something is wrong you, as the mom, will never know it. Wrongs could be committed at any moment and you won't know. The immense stress of wondering if you have chosen the right people to trust is never ending. If you are not with your child every waking minute, then that stress is with you. 

We parents of children who are nonverbal? We have every single one of us had this happen. Someone was cruel to our child. Someone was unfeeling. Someone committed a serious wrong to our child. And we caught it. Not because our child told us, but because we are these hovering parents because we must be. And knowing that we caught it strikes terror in our souls just at the moment we begin to relax. There is no relaxing. Not for us. Not now, not ever. 

And then you return home and snuggle your child and pull them close and tell them you love them. And you know you will never hear those words. And while they will snuggle you back you also know that time is precious and even in the middle of that loving moment the groaning may begin. Maybe you hugged too hard? Maybe they are uncomfortable? And it begins yet again.

You start guessing and you start getting it wrong. And at the end of the day everyone is hoping that tomorrow will be the day. Please let tomorrow be the day a grunt becomes a vowel. Let the groan become a word. Let the slapping become a sign. 

And it doesn't. Because this is permanent. It isn't going to go away. This is permanent. 
This frustration.
This fear.
This aching.
This grief.
It is a cycle. But it is permanent. 


And she never quits. This brave one? She owns me heart and soul.

So we try again. We get up and face the day. We encourage the yelling. Speak to us! Try again!! We smile with the laughter. We cringe with the grimace and hold out for that elusive hope. We learn that communication is more than words. And we learn to grant ourselves and those around us grace. And we learn how to fight better and smarter. We learn to change the laws, change the world. We learn to stand against discrimination.  And above all we know that love takes many forms. Love requires no words. It is an intangible, nonverbal force. 

And intangible, nonverbal?
That's our playground, ya'll. We own this.
We've got this. 

**I am humbled by the response and the shares this post has received. Thank you to everyone sharing this post. If you would like to reach out please contact me at keh1027@gmail.com**

119 comments:

  1. I know how lucky I am, knowing that slowly but surely my daughter is getting there... I'm sure a lot of people are going to offer suggestions and it feels kind of rude to do so (like I'm somehow trying to negate your situation) but that is not my intention.... Have you heard of Geminii? I can't speak from personal experience but it seems to have great results - with a lot of time and effort of course! I hope she gets there one day <3

    ReplyDelete
  2. Thank you for getting in my head and putting my thoughts on the screen. Yes, yes and yes.

    ReplyDelete
    Replies
    1. I am so happy this touched you. We all need to know we are not alone in this.

      Delete
  3. Yes this is exactly how I feel as I struggle to understand my 14year old daughter Chrissy with Down syndrome and autism. There are wondeful breakthrough moments of understanding but there are many more moments as you described above. I look forward to being in Heaven with her when she can tell me how I got it all wrong!!

    ReplyDelete
  4. Thank you for sharing. I live with a super intellegent, retired Navy Seal, who knows what he wants to say but can't get it out. Frustration is like breathing for him and me as his spouse. We do the best we can to support and walk in patients. Love unconditionally! Prayers going out for you and did your brave daughter.

    ReplyDelete
  5. I own every word in your article because this is the story of my life.

    ReplyDelete
  6. Beautiful. We have a non-verbal child. The pats or taps on the shoulder, the grunts and groans, the hugs and tears all ways to communicate, just not vocal. God bless you.

    ReplyDelete
  7. Wow! Someone else understands! I understand EVERY SINGLE WORD that you wrote as if I had written this article & not you. I ache for my 29 year old nonverbal son all the time. He tries and tries harder to communicate and I try and try harder to understand, but so many times I cannot figure out what he wants or is trying to say. I cannot even think about this for too long because I ache and I cry for him. Imagining what it's like for him not being able to just communicate a thought let alone his needs, his pains, his injustices....but also his joyful moments. What it's like to be ignored, pushed aside and left out because he has 'nothing to say' that can be easily translated. This is so devastating and heartbreaking to me. I cry buckets if I think about this for too long. I hurt so much for my son when he desperately tries to tell me something and I fail to figure it out....this is truly one of the most painful aspects of raising our child, now for 3 decades. Day after day, in silence he just continues to succumb to one unsuccessful attempt after another to be heard by me or someone else. The hurt and pain is not something we get used to or that lessens in time & it's not something that goes away for him either. It is always there. Thank you for sharing. I am not alone. You are not alone in your experiences. I wish everyone could understand how much our kids want to be included and have others just try to understand them & even if the can't - just to include them. I know you can empathize. All the best to you and your daughter.

    ReplyDelete
  8. I too have a nonverbal daughter. Thanks for writing this.

    ReplyDelete
  9. Exactly. Perfectly said. Amen. And thank-you.

    ReplyDelete
  10. Heart-wrenching and beautifully written! Thank you for sharing your truth and that of others who cannot find the words to do so, even if they are verbal.

    ReplyDelete
  11. OMG This!! How I feel every day. Thank you for sharing

    ReplyDelete
  12. I have tears. You put into words what so many people feel. ((Hugs)) to all of us Warrior Parents out there who are going through this, too.

    ReplyDelete
  13. Great article! I go through this every day. Thank you for putting it into words...all we can do is try our best to help our children and keep hope alive. Thank you again!

    ReplyDelete
  14. Great article, I go through this every day. I appreciate you putting into words...all we can do is try our best and keep hope alive.

    ReplyDelete
  15. I don't know how old your child is or what her abilities are, but have you considered a communication device? (My 3 year old is nonverbal as well. She isn't quite ready for one, but I am hoping one day it is a possibility if she does not end up talking...which I still hold out hope that she will.)

    ReplyDelete
    Replies
    1. Absolutely. We are working with her school to find one she will use. She is also blind and so that adds a later if complication to choosing the right device.

      Delete
  16. My life on a daily basis. Thanks for sharing

    ReplyDelete
  17. Thank you so much.. These word have been stuck in my heart for so long.. It's heartbreaking to look your child in the eye when she cries, but you don't know why or how to help her.. Why?? Why?? But I love her to bits.. She's my angelface,.. My one and only!!

    ReplyDelete
  18. Thank you so much.. These word have been stuck in my heart for so long.. It's heartbreaking to look your child in the eye when she cries, but you don't know why or how to help her.. Why?? Why?? But I love her to bits.. She's my angelface,.. My one and only!!

    ReplyDelete
  19. You just put my story into words. Thank you

    ReplyDelete
  20. This comment has been removed by a blog administrator.

    ReplyDelete
  21. Right when I needed to hear these words and know I'm not alone. Thank you for your words and understanding.

    ReplyDelete
  22. Your words ring so true. Thank you. Thank you. Thank you. I type this through tears because to have someone else put into words what you feel on a daily basis is so powerful and comforting. It helps knowing that you aren't alone in your doubts, fears and resignations.

    ReplyDelete
  23. Thank you for posting this. I feel this. I hurt with you. My family hurts with you. I love our life. It's a special type of life we get to live! This is the hard part, though. This is the heart-breaking day after day pain that comes with nonverbal.

    ReplyDelete
  24. I was thinking the same thing! She captured it perfectly.

    ReplyDelete
  25. I agree with Jessica... I also have a blog, but this is one subject I just couldn't broach. I shared it on my FB and our friends are now realizing there is a lot more to discuss when it comes to our E, a deeper level of pain that I couldn't explain. Thank you so much.

    ReplyDelete
  26. We know this pain too well too! Thank you and keep believing !

    ReplyDelete
  27. This meant so much to me.
    Relating on so many levels.
    Thank you for sharing.

    We've got this ����

    ReplyDelete
  28. Wow! You have described perfectly in words how we feel and what we go through raising nonverbal children. Thank you!

    ReplyDelete
  29. Such a touching piece of your life. Or should I say a story of our lives. I to have a precious daughter who cannot speak, cannot walk and who needs total care. I feel your pain in your words. I believe we are not cursed but we are blessed to have special needs children. It takes a special person to have a special child. I have no doubt that you are a awesome parent! Never give up on your child and they will never give up as well! Just know this...you are never alone and never doubt yourself you are doing everything that you can do. There are many of us going through the same things. You were one of the brave ones who told your story. Others will follow then with more support we will get through this together. God bless and thank you for sharing. Kim

    ReplyDelete
  30. I can't even begin to tell you how wonderful this post is... thank you.

    ReplyDelete
  31. Sweet Jesus.
    You have fully described the life I live. Its a difficult life...deep heartache and unspeakable joys. Ones that no one else will ever know except the rare few of us who live this life.
    Thank you for sharing. ❤

    ReplyDelete
  32. Don't ever give up hope. My nephew was non verbal. Yet now at 13 he says the odd word. Sometimes it's a single random word he's heard on a DVD. Then it might be "cake" or miraculously " thank you". It can and does happen.

    ReplyDelete
  33. This hits the nail on the head perfectly!!! Everyday is an emotional, nerve racking, anxiety filled day when you are the mother of a non-verbal child. But through it all and at the end of the day you realize just how blessed you are that God chose you for this very important role. My heart belongs to my earthly Angel Maddison Hope!

    ReplyDelete
  34. I can feel your fear, frustration and pain just from your words but know no one can really know the depth of that pain without walking in your shoes. That precious little one is so blessed to have you for a mom, and she will grow up feeling extremely loved and special because of you. You are amazing!

    ReplyDelete
  35. Thank you for making me feel like im not alone. This is wonderfully written. Fight on mom warrior

    ReplyDelete
  36. So true living this daily but I love my son so much ....his struggles are my struggles ����

    ReplyDelete
  37. Living this everyday but I love my son and his struggles are my struggles which eventually will be milestones n I'm so happy he's my tour guide 😘😍😍😍

    ReplyDelete
  38. Omg. This is AMAZING thank you from one mom to another. You nailed it.

    ReplyDelete
  39. This is amazing and I feel it on so many levels.

    I highly recommend Looking into MRT. It's given the at the brain treatment center based in Newport Beach California.

    My son was nonverbal until we went for treatment there. It's noninvasive and they do a free trial monitored by eeg. It changed our lives.

    ReplyDelete
  40. I loved this! I have a 24 year old daughter who is non-verbal so I thank you for sharing! It filled me with so many emotions and I loved how you closed...."We've got this" Stay strong!

    ReplyDelete
  41. Wow! This is my life except my son has about 10 words! Thank you for this one. So true.

    ReplyDelete
  42. This was a fabulous read. We live this life with our 6 year old son. He has about 10 words. Thank you for your words...my thoughts exactly!

    ReplyDelete
  43. With tears streaming down my face I Thank you for putting into words my world with my own son.

    ReplyDelete
  44. Wow!!! This is me.... the mum that keeps on trying...with the little guy who's non-verbal... Thank you for explaining how I feel...

    ReplyDelete
  45. For my son I usuly can tell what he needs but there are those moments that I just wish he could tell me what he needs. Sometimes I think he is just settling for thongs bc maybe I'm not guessing right that day.

    ReplyDelete
  46. I too have a nonverbal autistic, 7 year old and this article hits me square in the chest, I/we face this everyday, the not knowing, never being sure, always praying for that voice to come, one day we pray one day, until then we will keep fighting and hoping and praying, after all were all they have. God bless you and yours.

    ReplyDelete
  47. Thanks so much for writing this. We got this but we ain't got time to write lol! You did good.

    ReplyDelete
  48. Thank you for sharing. I am sure you are aware of these applications available to help nonverbal kids be "verbal" are discussed on the follow page: http://www.friendshipcircle.org/blog/2011/02/07/7-assistive-communication-apps-in-the-ipad-app-store/

    ReplyDelete
  49. Thank you so much. My son is 3 years old, autistic non verbal. And this week he started school, I am a wreck, my stomach is in knots!! I have diarrhea, can't eat!!! I worry all day, check my e mails and call log, worrying that I missed something! People don't even understand how I feel! They keep saying, he us fine, quit worrying! But in my mind, what if!!!! I long to hear, I love you momma! This is so hard for us as mothers , and even harder for them!!! Thank you so much for these words!!!

    ReplyDelete
  50. Thank you so much! My 3 year old just started school! I am a wreck! People just don't understand how we worry!!!

    ReplyDelete
  51. Thank you for speaking for us, the parents of nonverbal children.

    ReplyDelete
  52. Thank you for writing this. It's how I feel daily and normal mothers have no idea of my fears. :( I worry when he goes to school and when he gets home if he's hurt or hungry. Its very hard to live the life or a Non verbal Mom

    ReplyDelete
  53. Having a non-verbal child has helped in my work - my picking up on non-verbal cues as a teacher is second to none!

    ReplyDelete
  54. My son is non-verbal aged 22. This could have been me. Thankfully, although he remains non-verbal, he is well able to communicate these days using a simple smart phone and chat programmes. I hope it gets better for you, the fear, the pain, the worry though doesn't ever go away.

    ReplyDelete
  55. Pertinent and thought provoking post. Thank you

    ReplyDelete
  56. You have made me cry, I feel your every word xx

    ReplyDelete
  57. Have you looked into RPM? Rapdi prompting Method, hoping this will bring 'words' for my son

    ReplyDelete
    Replies
    1. We are looking into all kinds of things right now. We have not had the honor of being her parents since birth and so we are trying to catch up and find all the resources to help her at this time.

      Delete
  58. 💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗

    ReplyDelete
  59. This is beautiful. My stepson is autistic and nearly non verbal. This is everyday life for us as well.

    ReplyDelete
  60. Love conquers all , it is often not easy but the only true force to win.

    ReplyDelete
  61. Yes. My son has become more verbal over the years, but still can't communicate anything complex our outside of normal experience. He's recently had a s vere allergic reaction, breaking out in hives all over his body. All he can tell us is "worried". And "scratchy", which we assume means it itches. We have to me 100% vigilant at all times. It can be exhausting. And, as the author says, very isolating. Thanks for your thoughtful words. Somehow its better knowing we're not alone.

    ReplyDelete
  62. Beautifully said. My son is similar.

    ReplyDelete
  63. Thank you for this. You have taken my thoughts and written them so eloquently.

    ReplyDelete
  64. wow this is amazing how all of us mothers go through the same hurt the same feelings the same fear the same stress.We are supermoms the best of the best the strongest most loving and at the same time the strongest fighters we will go to the end of the earth for our son/daughter we are the voice may gods peace be upon all of us the mothers god bless all who read

    ReplyDelete
  65. Couldn't have said it better thank you x

    ReplyDelete
  66. Katie thank you for sharing your story - I shared my post regarding my sons journey with Apraxia. http://sandrawiese.co.za/blog/ I salute you!

    ReplyDelete
  67. I love this.. I have an autistic son and although he is somewhat verbal, I can relate to much of what was said. Thank you for this!

    ReplyDelete
  68. I couldn't have said it better and it helps knowing that there are others that understand what we go through every day!

    ReplyDelete
  69. I have no idea what you are going through, all I can say is good luck, enjoy your child for whom they are. Love is ultimately the best language of all.

    ReplyDelete
  70. Wow, this totally resonated with me as we also have an almost 17 boy who is non-verbal. He is our biological son and also has a dx of autism. When I say the word "non-verbal", sometimes people will say, "You mean he doesn't speak much?". NO, I mean he's NEVER said a word or even a ma-ma, da-da ... non is no. When he goes to school, I have NO idea how his day is unless someone tells me and sometimes no one tells me anything. Was he happy? Did he learn something new? Did he take his shoes off and throw them across the room? Did he solve world hunger? I have no idea ... (but working on that BTW :-)) I know he knows he's loved and he shows us that too with an infrequent smile. Yes communication is more than words and love doesn't require words but dang, it's hard and it hurts. P.S. A friend shared this on Facebook. Thanks for writing it.

    ReplyDelete
  71. Good bless you mothers in this position. Good bless you and yours

    ReplyDelete
  72. Thank you for putting my feelings into words. My baby is 3 so my hope is that for us, it's not permanent and one day we'll hear her speak. Hugs.

    ReplyDelete
  73. Hey,more courage and power to you. I as a mother can totally relate to you as I am traveling in the same boat as you. My son is autistic and doesn't speak yet. But as you said communication is more than mere words. We shall fight and surely win for our lovelies. We have to be strong and be there for them and with them till they make it. Just one thing I would like to add- believe in her, believe in yourself and believe in God.

    ReplyDelete
  74. Hello Katie, I read your story twice, when my friend Kasi shared it on fb, today. I was in tears.. I'm a single mum of a most beautiful little boy called Adrien. He's 5 years old and just went to school.. He's als nonverbal - although he is managing to say " mum" from time to time, and he used to say " no". But " mum" is only one, clearly recogisible word for him.. Thank you for writing about your world, and know - we are sharing your world, too. Love from Ania & Adrien x

    ReplyDelete
  75. Beautifully expressed! I have non-verbal friends who use sign language.

    ReplyDelete
  76. Could not agree more. You spoke my mind

    ReplyDelete
  77. As a mom to a non verbal little girl, I couldn't have said it better myself. Thank you for putting voice to my grief!

    ReplyDelete
  78. This is spot on! I worked with a student for the past 2-3 years and it would break my heart when I couldn't figure our what was bothering her. But so many days we would get her smiles or giggles and that would melt our hearts. I think I learned way more from her than I gave in return, but love these non-verbal high medical needs kids!!!

    ReplyDelete
  79. Well written. I love you David. I hope you know, feel and understand that.

    ReplyDelete
  80. I feel like sharing with every single person on the earth and telling them that this is what I am going through all the time... Thank you ....thank you.... thank you for expressing my feeling.... You writing skills are extra ordinary... Wow....

    ReplyDelete
  81. God bless you for sharing ur struggle ur pain ur love and ur hope ! We will be with u in our hearts and prayers never forgetting the words u instilled in our lives , fingers crossed they will find a cure thank you always alex c

    ReplyDelete
  82. Love this!! My son is 5 and nonverbal. You said everything I feel every single day!!!

    ReplyDelete
  83. Beautiful you just spoke the words that are in my head daily. I also have a DS girl who is non- verbal and everyday I pray something will come out . Thank You.!!!

    ReplyDelete
  84. Thank you! I live this every day...

    ReplyDelete
  85. We too have a non verbal 4 year old princess. She is our life and everyday our life is a challenge. I totally get every written word that you type as this is the total roller coaster of the life of a nonverbal child. Thank you for such an incredible post. Lord give us the strength that we need to nurture our special people.

    ReplyDelete
  86. you have so well expressed my broken heart. my child is vent dependent, she can't make a sound and I remember the day she woke up from the medical coma they had kept her in and trying to make sounds to me. the look on her face when she realized she realized she could not even make sounds now. my heart broke then and never heals.

    ReplyDelete
  87. This article ripped out every feeling out of my chest that suffocates me every single day... day in and day out. I have never been able to share these fears with another parent who faces the same reality.. I suddenly feel not quite so alone. THANK YOU!

    ReplyDelete
  88. This article ripped out every feeling out of my chest that suffocates me every single day... day in and day out. I have never been able to share these fears with another parent who faces the same reality.. I suddenly feel not quite so alone. THANK YOU!

    ReplyDelete
  89. This is probably how muy daughter feels with her son. It hurts me that we don't know what they think, feel, wanna say ect but I know it's even worse for the MOTHER.

    ReplyDelete
  90. I can't imagine how you cope. The fact that you do is testimony of your loving nature. You are a saint. Please PM me I'd like permission to submit your hearfelt letter to several news services. People need to read this.

    ReplyDelete
  91. Beautiful thank you for putting this into words

    ReplyDelete
  92. Thank you for sharing! Thank you for caring! Thank you for being the best momma to your beautiful child that you can possibly be! I share in your anguish, your fear, your exhaustion... Love IS unconditional!

    ReplyDelete
  93. I know just how you feel, because until one year ago, this was my reality. Having never known one thought, one wish, one fear was so devastating. Well, finally, I found the rapid prompting method, and my son was quickly able to answer my questions, and eventually, tell his own story. I hoped I would get "yes" and "no" answers to whether my son was cold or hot, whether his head hurt, or his tummy, etc. RPM brought us so much more than that.

    ReplyDelete
  94. I cried all the way through this. Absolutely beautifully written article about the truth of our lives that most people will never experience. 💔

    ReplyDelete
  95. Thank you! I, too, have a non verbal child. She's now 7 years old and I feel her frustration when there are things that she cannot communicate with us well.

    ReplyDelete
  96. Please check out Rapid Prompting Method. Your daughter does not have to suffer in silence. There are other avenues for true communication. http://halo-soma.org/

    ReplyDelete
    Replies
    1. We are working very hard to help her find a way that she can communicate her desires to us. Many of the devices and methods are not suited to her distinct variety of needs. There will be something! We just have to find it. And that takes time.

      Delete
  97. Blimey. That's our life. Every day.

    ReplyDelete
  98. Thank you, that is exactly what I feel about my brother. It is that stress that I do not know if someone has been mean to my little brother. But I pray for God to take care of him when I am not by his side.

    Thank u

    ReplyDelete
  99. My son didn't speak at 2.5 years old, finally I caved and started speech therapy. Slowly but surely we are getting there, more words everyday, he's about to turn 3.
    That struggle of trying to figure out what he needs was so hard. It was such a guessing game, and that fear that someone might do something to him coupled with my past coming from an abused home turned me into a stay at home mom. We barely makes ends meet every month, but my peace, my knowing he's safe, and getting the chance to help him is worth it.

    Thanks for writing this, definitely hit close to home, and definitely nice knowing I am not alone.

    ReplyDelete
  100. My daughter hasn't spoke a word since she developed flu like symptoms & was diagnosed with herpes encephalitis @ 22 mos. old. She is such a happy girl 99% of the time. When she isn't feeling well; however, it is often difficult to figure out what is ailing her & how to help her. The desire to do everything I can for her is always there. It's a difficult situation to be in @ times, but I wouldn't trade anything for the time that I am allowed to have with her.

    ReplyDelete
  101. My heart goes out to all parents who have this strugle our autistic child was nonverbal but has began to speak. Still not using expressive language enough to tell us what is wrong. I know how hard how frighting it is and how amazingly desperate the feeling inside to hear them say "I love you" or they are "ok" "happy", "sick" those words are so hard to go without, and honestly No parent should ever be forced to put their child out of eyeshot if their child can not tell them if they have been hurt.

    ReplyDelete
  102. Thank you for educating me today! Ignorance is a terrible place to live. My heart goes out to all of you. I have a few stories in our family ... the struggles we endure, I hope God alone, suffices. XO Madeleine Davis - Tampa FL

    ReplyDelete