The following video is is being discussed heavily in the autistic community right now. I want to share my thoughts on this video, but want to ask that you take a moment to watch it in its entirety before I do and then watch the video of Emma making her routine sounds. If you came here to read my CWO contribution, it is in the post below this one.
Emma Grace (it is loud):
I watch my daughter, who is autistic, make sounds that no one really understands. I watch her mouth click, usually to its own unfamiliar beat. I watch her hands move, her fingers sway next to her eyes. I watch her body move to a silent beat. I listen to her voice, loudly sharing what is on her mind.
I watch her play with her toys, making them dance across the floor in odd groupings. Lining them up “just so” while clicking and singing. I watch her gather all of the round objects in the house (balls, socks rolled up, etc), placing them in the basket with her pumpkins- she pulls out her pumpkin books and lays them on top of these round objects, and then rubs her hands on each of the round object while humming.I watch her swing on the swing, moving her fingers with the chain, tapping her tongue on the roof of her mouth as each finger passes over a link. I watch her in the bathtub, as she lightly rubs her hands across the top of the water while tapping the surface. I watch her eyes dance, shifting left and right never staying on one object too long.
I watch her. I listen. I see a little girl who shares every bit of herself with the world around her, without holding anything back. I see a precious child who’s voice is never mistaken, never withheld. Although it is loud, and often times alarming, it is very present- reminding us that she is still here. She still wants to be heard. She still has something to say.
I know that there are those out there who view her only as a disability. I know that these people exist, Ive met them first hand. I also know that Emma’s voice has just as much meaning as your’s and mine. Its awkward dance has just as much passion and definition. It’s unsteady flow does not negate it’s importance. It breaks my heart when I see people in the medical field refer to children like Emma Grace as “broken”, “retarded”, “Devoid”. It saddens me to think that there are campaigns in place right now that devastate mothers as soon as their child is diagnosed. I was so blessed to have the support system I had when Emma was first diagnosed. There is so much hope in this diagnosis. So much support and love. These children have voices, they have the ability to communicate, they just sometimes do it in ways that seem so trivial and unnatural to us.
All of these children have something to say, hopefully we will all take the time to stop and truly listen.
I am going to make a commitment to myself today. I will stop making excuses for my daughters voice. I will stop apologizing to those who find her loudness offensive. I will not confront nor will I acknowledge anyones dissatisfaction regarding her means of communication. I do this often, in the store or while eating out. I am self conscience of those around me, and their reaction to Emma. It hurts me to see the frustrations on their faces, and then I feel as if I have to explain that she really doesn’t mean to be offensive. She isn’t a bratty kid who is loud and needs discipline.
She is just being herself; a beautifully crafted little being who lives every day to the fullest extent.
(and likes to share her zeal for life very loudly!)
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((HUGS)) My 2 year old and 4 year old are with me as I watch both. The little one perked up and went “pretty…music” The older one said “she’s talking her way.” Kids instinctively “get it”. Wish adults did. Congratulations on your new perspective.
by Miriam PaulineHeather-I want to congratulate you on making the commitment to yourself and your daughter to not make excuses for her behaviors to others. I have two daughters with different special needs. One has Asperger’s and the other is legally blind and wears a patch to correct an eye turn. The one with the eye turn has specifically asked me not to discuss her eyes when out in public. She is 4 and she says she is embarressed when I talk about it. At first I thought , well how am I going to answer people’s questions…because you know how people always have questions when they see a child different from the norm. Now I have learned to honor her request as her self-esteem is worth more than what other’s think of me. I have tried following the same approach with my older daughter with Asperger’s. I no longer explain why at 6 and a half she neighs and pretends she is a horse whenever she is nervous. I am just there for her and doing what I need to do to best meet her needs. I applaud your efforts and will pray for you and your daughter.
Jennifer
by JenniferMy youngest (2.5) is here and said, “she’s singing Mommy!” He smiled through your daughter’s video.
What I think is as beautiful is your new commitment. It’s perfect and I’m proud of you for making it.
by Karen RaniWow. I loved that, both videos and your post. The initial video is incredibly powerful and reminded me SO much of Baraka. If you haven’t seen it, its a movie that has no commentary just the music and chants and visual images of people from all over the world. Sometimes in all honesty its alarming/frightening because its so unfamiliar but it was still beautiful and almost hypnotic.
by robynGood for you with your commitment. I’m incredibly lucky to have an older cousin who wasn’t autistic but had other disabilities which meant that she communicated with the world with a similar intensity and passion….the rest of us are missing out on something! :)
Heather, you shouldn’t have to apologize for your daughter. But I do know how you feel. My youngest son (soon to be 11) has special needs and believe me, I too, have seen the “looks” and been given some wonderfully rude comments from people. My son’s conditions are kinda long and complex but basically, he does things sometimes that people might view as him being rude or a brat, not knowing a damn thing about him. It’s hard sometimes to ignore the looks or not break down or freak out when someone makes a snide comment. I’m slowly learning that, I will not apologize for the way my son is, that he can only be who he is. And that is a special boy who deserves the same respect and consideration as any “normal” child. I totally relate to your words and you daughter’s song is beautiful.
by SassyHeather, I hate that you feel that you have to apologize for your daughter. I think that in writing about her like you do everyday here, you are helping people to understand more about her and that is wonderful. Knowledge is the key. Thanks for enlightening me today. Blessings!
by JanisThank you!!!
by alisonI found the first video very interesting. Although we deal with a different set of behaviors with Evan, as he has Down Syndrome, still I have had the same thoughts as you’ve expressed today. We all judge people by their appearances, and this is just another reminder that everyone needs to look a little deeper. People who have taken the time to get to know Evan & understand his (somewhat limited) language can attest to the fact that there’s more going on than most would realize. Thanks for sharing these videos!
by Lori FBoth of those are amazing. I’m posting something about them, including a link to you, on my blog today.
by ThoughtfulMomWhat a moving post! Thank you for sharing Emma Grace’s story. My daughter Macy is 5, with no speech. I have learned not to make excuses for her. We accept her for who she is - a happy, loving wonderful member of our family. Your daughter is very blessed to have a loving and supportive family!
by KathleenPeople who don’t live in your world (and Emma’s) have warped perceptions, Heather. Good for you that you’re going to stop apologizing for her. My word, she’s a beautiful child. She may live in HER special world but who are we to compare worlds? I’m not so sure my world is any better than hers.
I have no audio on this computer since a virus destroyed it. But I’ve heard Emma in the background during a long, long telephone conversation with you. Nothing about her voice bothered me at all. It’s just Emma and that’s just fine, thank you very much.
by Barb((hugs sis)) I see my beautiful and amazing lil niece! She amazes me how awesome she is.
Love you guys!
by CatOh dear one! How special and precious is your daughter! One of my very best friends, her oldest son is severely autistic, among some other issues, so I have witnessed the difficulties and the accomplishments firsthand. What a sweet girl you have! God is teaching many out in the blogsphere through your posts about her and autism.
by NicAmen! This other person and Emma are very obviously (to me, at least) communicating and creating in their own unique way, and I think that is really neat and very interesting. I’ve often wondered (and please excuse me if this is in any way offensive) if it’s the rest of us who are “disabled”, not being able to experience or share ourselves with the world in a totally unfettered way. I’ve often wondered if many of these labeled “disabled” people actually have higher intelligence than the rest of us, and we are just not smart enough to be able to communicate with them…
She is a very special girl, and I applaud you for striving to understand her. You are one strong woman!
by sarahgraceThank you for sharing this, Heather, and both videos. I continue to be blessed and inspired by your fierce commitment to and protection of Emma Grace, as well as the rest of your family, of course.
by RebeccaHeather,
Once again, I have forwarded today’s post to my foster daughter, Diana, whose youngest daughter has just been diagnosed within the severe spectrum of Autism.
Emma is such a delight–and while listening to her sweet voice, I prayed that one day–our Hailey will begin to use her own voice. At this point (she’s 3 1/2) she is non-verbal. After crying, non stop, for two years, she no longer vocalizes. Communication is a real struggle for Hailey…..
Your video not only displays the beauty of Emma’s life and voice…it offers hope to others who are praying that their autistic loved one will enjoy and delight in life as Emma does.
You are a blessing Heather! And Emma is simply–a Gift from God!
Diane
by DianeHeather, thank you for this post. The videos and your words are so thought-provoking and educating.
My prayer is that that the traffic to your site would sky-rocket today and continue the awareness process.
I will also pray for you to have the courage to continue to not excuse Emma’s behavior, but to educate others about Autism and about loving one another as Jesus loves us. What an opportunity the Lord has given you to redirect the attention Emma receives to Jesus and the call He has put on our lives to share the Gospel. A tough job, but one I bet you’re up for!
Blessings,
by ElisaElisa
I’m speechless but deeply moved.
You and Emma are a gift.
You and yours are in my prayers.
by LyricWhat a beautiful post! It is so wonderful that you choose to keep Emma. I don’t know if I shared before but years ago I worked for Region lV Children Home in Nebraska. I took care of several little ones like Emma. There were so many children and the parents just let the state raise them. Some parents visited some did not.
It is so wonderful to see more parents keeping and raising their children. May God continue to richly bless you!
by Kathleen Marie[…] Heather vows not to make any more excuses for Emma’s sounds. She wrote: I will stop making excuses for my daughters voice. I will stop apologizing to those who find her lou… […]
by Troll Baby » Guess the Celebrity, and a Really Really Perfect Post![…] awarded Grow Wings Simply Sassy and Something Baby Blue awarded Major Bedhead Troll Baby awarded Especially Heather Queen of Drama awarded Long Island Dad IzzyMom awarded Half of the Sky Lady M awarded Bub and Pie […]
by Petroville » Blog Archive » A Perfect Post ~ January[…] share our journey, and to share my heart regarding my daughters disabilities. The fact that “I have something to say” was chosen for this award, well it touches me deeply. I pray that it touched many of you […]
by Especially Heather » Blog Archive » You like me.. You really really like me!That is beautiful.
by RLGelberHow ironic that I would chance by Troll Baby’s (Karen) website today and find your link. I just wrote out our son and his special language and the frustrations he’s had in being able to be understood in the way that he expresses himself.
by NatalieWe’ve heard it all, too. ESPECIALLY in just trying to get a diagnosis!
Good for you in not making excuses. I totally understand and agree. It’s very hard, isn’t it? I will say that once I explain that he is autistic, the apologies come from the people who have just been so rude to us.
Education and tolerance are two big keys.
All the best,
Natalie
[…] http://www.especiallyheather.com/2007/01/30/i-have-something-to-say/ […]
by Whoduhthunkit!? :: Tune Up Your Mind :: February :: 2007Emma is truly precious. God Bless your Family.
by DianeI am truly speechless, what amazing videos. Never feel as though you have to defend your daughter for who she is, she is beautiful, to hell with anyone who thinks otherwise.
by Mrs. SchmittyWell shucks! I can’t watch either of the vids. :( I don’t know if our server here has blocked YouTube or what.
by KarlaBut I enjoyed reading your post (as I always do). You go girl! You should not have to apologize for your daughter. People are really so strange. Adults anyway. I read through some of the comments above and see where the precious children understand Emma. Why, oh why, can’t adults be more…adult?! :\
I love this post - I love your family! :)
[…] at Especially Heather wrote: I know that there are those out there who view her only as a disability. I know that these […]
by Ballastexistenz » Blog Archive » Some videos by other people.This was so completely thought provoking that here I am several days later finally commenting. Thank you so much for sharing these beautiful videos.
by ToniHeather, you are being a wonderful advocate for Emma. I am sure you inspire many parents that face similar struggles in your stand that you take for your daughter. There is a passage in scripture that comes to mind (although I cannot find it, although I can visualize it in my mind, for the life of me at this moment) that talks about being a voice for those who cannot speak for themselves. As your post and the video show, your daughter and others have a voice, even if others can’t always understand it. God does!! Praise God, He does!!! He knows everything about each soul!
Being a child of deaf parnets, I recall the things I had to answer, the looks they would get when others did not respond, etc. I agree with another person who commented that educating others is part of the journey. So many women have encouraged you so nicely in their comments here. God bless you as you seek to be the advocate for your daughter with each and every new day. I, personally, loved her melodic voice. She sounds absolutely delighted. A treasure!
by ErnaI totally agree with you, we should not have to explain to anyone why our child is acting out in anyway to anyone. My son is 9 and is autisic and he will make loud unsual sounds sometimes. I found myself constently explaining to strangers about my son actions. An education center gave me cards to pass out to total strangers that explains autism on the cards. Then I decided, no this is my child and I do not know any of these people and this is the way he is and I do not need to explain a thing to anyone we come across. A kid that has no disabilty acting out with behavoral issues,we don’t see them handing us cards. Ex.(well I just have a bad child no excusses.),I have had so many people say so many rude things to me about my son out in the public, but my son is human just like everyone else and he deserves to be treated with respect also.I agree no more explaining to people.Society needs to learn that everyone in this world are different and that God made us all in his unique special way.
by SherryGod Bless
Sherry
Heather, as a mom of an autisic daughter, I too know what it means to feel awkward. My husband and I have heard it all. We are lucky and unlucky that our daughter is extrememly high functioning making her awkward behaviors even more noticable. I don’t aplogize for her behvior but we have certainly avoided certain places due to this.
God blesses us all in different ways, and aren’t we lucky to be able to see beauty in something so many find tragic.
by RachelAmen, sister! Never apologize for the beautiful and unique way the Father God has knit together your sweet Emma! Man does not understand the ways or thoughts of God. He has designed Emma with a purpose…I can see what a joy and blessing she is to your family! Keep rejoicing in the precious gift she is!!
by KariThis brings back memories of when I was a child– I was hard of hearing and I couldn’t monitor the loudness of my voice and was sometimes repriminded to lower my voice. As a result, I learned to speak so softly that as an adult, people started asking me to speak up…
Karen
by KarenI know that I come from a position of bias being blessed to be Heathers Dad, and The Papaw of Emma Grace. I have believed for some time now that Emma was given to Mark and Heather for “His Glory”(God’s). He knew He could trust them with one who was so defenseless, vulnerable,and Very Precious to Him. I also believe that God desires to, and has touched others through the weakness and frailty of Emma’s life; to challenge those who think they have it all figured out and all under control. I love my daughter, she takes my breath away. I love my precious granddaughter Emma, she is amazing, and helps me to understand how weak I really am. I love My Lord, His gifts and love are perfect.
Psalm 139:14
I will give thanks to Thee, for I am fearfully and wonderfully made; Wonderful are Thy works,And my soul knows it very well.
Psalm 41:1
How blessed is he who considers the helpless; The Lord will deliver him in a day of trouble.
1 Cor. 1:27
“but God has chosen the foolish things of the world to shame the wise, and God has chosen the weak things of the world to shame the things which are strong,
Job 5:16
“So the helpless has hope, And unrighteousness must shut its mouth.
YEAH GOD!!!!
Dad
by DadWow! What a truly amazing way to see things. I can see and read that you are blessed and little Emma as well. You are an amazing mom and I for one, thank you for sharing this. I have never even thought of autism in correlation with a language but I have always believed that if we opened our hearts and minds, that we could come to understand persons with this condition. Thank you for showing me there is more!
by ColleenHeather, what a beautiful tribute to your daughter. Her story, and yours have brought me to tears this day. Know that someone in Indiana is praying for your family tonight.
by AmyHeather, never apologize for Emma. God made her, and He doesn’t make mistakes!
My friend Kristina has a unique perspective on her 4 year old autistic son. She feels he is a truly spiritual being, in harmony with God, and enjoying His creation in a way we “normal” people cannot.
by JacquiHeather - thank you for sharing this. I am a physical therapist and I work with both adults and children with developmental disability (including autism). You have said what I always have believed…just because we can’t always understand someone’s language, doesn’t mean they don’t have something meaningful to say and add to the world. Your thoughts and the videos give great insight into the sometimes confusing world of autism. Bless you.
by WendyHeather-
by Jenn in HollandI have been reading the multiple layers of your story for the past hour or so. I had fully other intentions for my day, but actually believe I was led to find this site and be able to read your life today. To say that I am moved is a grand understatement. I am so touched by your honesty and by your faith. Reading here this morning has affected me deeply and I really appreciate the chance I had to spend with you. I will of course be adding my prayers to others for your success as you meet with the experts at the MAYO next week. I, like you, have no idea what may come of it, but I do believe strongly in the power of literal and constant miracles in life. I also believe that you are one of the amazing, incredible human beings who can handle ANYTHING. There is support and love behind you, to buoy you up and protect you in peace, comfort and grace.
I want to say thanks especially for this particular post about Emma Grace. I can’t exactly sum up what viewing it has offered me, but in looking deeper into my youngest son’s delays and disablilities I am grateful to know others who are living life with someone very special and teaching me that that alone is a precious blessing.
Blessings on wing to you and yours.
I just spent time “getting to know” you and your family. You are amazing and I’ve enjoyed and learned much from your site. Thank you. I’ll come back to check on you all again.
by momto3cubsHi Heather,
I wanted to tell you that I had the privilige for two years to work with a young autistic boy in Preschool choir at church. We’d sit and sing and do rhythm and sometimes just smile. He was the youngest in his family. Sometimes there were people (who truly thought too highly of themselves) who would be unkind and act like Brent’s voice was too loud, but I tell you what…each one of us in that classroom were more blessed by Brent than anything else about the class. If he was out sick, everyone missed him. Everyone learned something very precious from Brent…he caused us to love more deeply I think.
They moved away to Ft. Worth and enrolled Brent in one of the horse therapy schools. Brent really bloomed there.
At the same time in Texas, there was a friend of Chris’ sister, whose son was autistic. She had written a book about it. In the book she wrote that she took her son out early in the morning to show him what “quiet” was like, but he heard the birds and distant cars still. Her research led her to believe that very good hearing and over-stimulation due to all the sounds caused difficulty. She said that is why when her son was in class, he’d tap a pencil. He’d listen to the teacher, but the tapping helped him to focus on what she said.
I’m praying for you today…still praying for God to remove the tumor…asking Him to bless you with a miracle!
Much love and prayers,
Holly
PS You have a treasure in Emma Grace…what a great name for her, too!
by Holly SmithNewbie - found your blog via a link from ‘life with Autism’ who linked your posting.
by mcewenNot sure why I’ve not come across you before, but I was posting on this issue [my autistic boys and their language] today [blog against Disablism Day]
I had that same video on my sight - it is such an eye opener that I wish more people could watch it.
Best wishes to you and yours
You are a beautiful mother.
by Jenn M.I am amazed at your strength….thank you for allowing me the pleasure of knowing more about your daughter. I am currently obtaining a degree in Special Education, and just seeing that there are parents in this world who believe in their children no matter what labels the world may attatch to them, well it reminds me of why I want to teach in the first place, because these children want to learn, and deserve the very happiness that we all do. the love you have for her, its so beautiful only God could really be able to define it…thank u for letting us see it !
by Heather LeeGod bless you and your daughter and may your page continue to touch peoples minds and hearts….~heather lee
i just stumbled onto your blog… and this post especially caught my eye. and reminded me of Proverbs 23:11-12 “…for their defender is strong, HE will take up their case…, (YOU) apply your heart to instruction and your ears to words of knowledge.” God alone is our best defender. We do not need to defend ourselves or our loved ones, we need only to listen to His words of eternal, knowledge.
by michelleI undersand everything you are saying. My sister is 29 years old and autistic. I know the looks and the whispering. It is ashame that people view these people as nonhuman. It is very upseting to me.
I am a special education teacher and try my best to get people to understand that these children are children just like the rest.
by Lou ArnoldMy 5 year old daughter watched this with me, and she too wanted to know about the song.”What song is that?”
I told her i thought she was making up her own song….”no, I have heard that song before”.
Children really do get it…no wonder we are told to be as little children…so pure in thought and expression….even when the expression does not meet our expectations or standards.
by JenHeather, I want to thank you for sharing your family’s MIRACLE! It touched me to read your commitment. I have been blessed to have 3 heathly children, but I bet I am not half as strong as you have become. If Emma’s way of communicating offends anyone they need to take a monment and try to put themselves or their child in her shoes and I promise you they would be grateful to have her as you all are. That just shows you that people take alot for granted this day in time. Yes, she is has the right like everyone else to communicate as loud as she wants to. Yes she is different (but precious) and life would be very dull if we were all alike. My thoughts and prayers will be with you and your family for always!
When times get hard, just remember God has a reason for everything that happens, even though its hard to understand at times.
Emma sing as LOUD as you baby girl….
by ValerieBeautiful!
by JenMom@lotsofscottsI had a wonderful worship experience listening to and watching the 1st video. It was peaceful music to my soul.
I loved hearing Emma Grace and I heard her loud and clear. She is expressing herself and I KNOW she has something to say.
Her words are music to the ears. :-)
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