If only I could hear your voices…..

Thanks to my cousin Patricia , I have found a new blogger that I love. Her name is Jo Ashline and from  the small amount of time that I have spent on her blog in the last 24 hours, I think I have found a new friend ;) Some of you might have read her post that was shared on my facebook wall yesterday (if you didn’t – stop what you are doing and go read it HERE) it is a MUST read.

Then, there is this post (again, love it) The title alone “hold-on-mama-hope-is-here: a post dedicated to an autism  mommy desperate to hear her sons voice”

Many of my “Rett family” know what it is like to have one non-verbal child in their house, but there are very few who in this world that understand the deep cutting – absolute heart break of both  my children being non-verbal. The gut wrenching desire to HEAR the words from either one of my little loves saying “i love you mommy” or “hi”  or tell me what hurts, how their day was….anything. It is by far the most difficult part of both Rett Syndrome and Down Syndrome/Autism.

Don’t get me wrong. Brooklyn communicates with me  – she is a CHAMP at eye gaze. She does her school work and picks out her tv shows, all the basics. But lets face it – she is still limited to what I allow her to “say” – what I put on her eye gaze board. Now…we hope that changes DRAMATICALLY with the Tobii (which by the way we are NOT SO patiently waiting to hear back from insurance for approval.) I am sure she will be telling us all sorts of things with that thing ;) But…until then….we guess. I am sure she wants to tell her brother to get out of her way, she is trying to watch tv, or tell me that she is tired after a long day at school and she doesn’t want smothered with kisses, heck she might just want to tell me she wants to sit on the couch and not in the dumb recliner. I see the eye rolls when I am singing the wrong words to her songs on the radio or when her cousins are being absolutely unexplainably silly. I see the eye rolls and long to hear what she is saying in her head.

And Boston….dear, sweet Boston. No eye gaze, no sign language, no words….and the beginning of LOTS of frustration (for us both) I knew it was a high possibility that language would be delayed – he was, after all, a 2 pound, 10 week early preemie, delays were inevitable, then add in Down Syndrome – expect more possible delays….now the Autism diagnosis. It is beginning to seem that the delays have turned into “never gonna happens.” I know that is not true (even though it feels very, absolutely true) It just is going to take more time with Boston, more patience, more of me figuring out how to “see” what he is saying. I will keep trying. Those of you who know me personally know I am not one to give up – especially when it come to my little loves.

(but for the record, I will still be praying, begging, and pleading that we get words or signs from him)

For those of you out there that “get it” know that I understand you, I am one of those desperate moms that would give anything to hear my kids voices. And for those of you out there who have a house full of LOUD little chatterboxes and find your self saying “please, please just STOP TALKING for one second, mommy needs some quiet,  or  lets play the “see who can be the quietest game” – I beg you to listen, truly listen to your kids, hang on their every word. Talk WITH them, not TO them. and be thankful….oh so very very thankful.

Those eyes…..20130105-155648.jpg Those beautiful, amazing eyes….

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They have have so much to “say”

4 Responses

  1. Sara September 5, 2013 at 8:24 am | | Reply

    Two and a half years ago we were blessed to foster an amazing 9 year old who only had ever had one word. We were told that at 8 that’s about all he will ever have. Thanks to the legacy of Livvy I decided then that our family motto “never say never was going to extend to our newest family member. Well two years later we have over 20 words. It’s been hard work but I know you aren’t scared of that.

    Have hope honey that one day you will be the mama wishing for
    five minutes peace and quiet. I have faith. Love you xxx

  2. kerstin barth September 5, 2013 at 3:30 pm | | Reply

    Thank you for that Kelly. You speak from “my” heart as well as your own. I know all too well exactly what you wrote about. It puts a pain in my heart each day. Hug.

  3. Sarah September 5, 2013 at 6:54 pm | | Reply

    Hi,

    I do ABA therapy at my job using the verbal behavior approach. I imagine since you posted about Boston’s autism diagnosis you have gotten lots of suggestions. But I did just want to throw out this book, “The Verbal Behavior Approach,” by Mary Lynch Barbera. Lots of the kids who come to our clinic have no eye gaze/signs/words, but we use this particular approach that focuses on language to totally turn that around. That book is geared towards parents, so it doesn’t require lots of ABA experience to use. Even if just a few principles help, it can make a big difference. I know you are trying to get ABA services, but for certain skills, especially requesting things (called “mands” by people doing ABA), you can incorporate teaching them at home and see great results. Mands are typically the first area of focus with our clients.

    Again, I’m sure you have lots of advice/help, but if you ever have any questions about teaching any behaviors, you can definitely send me an email.

    Sarah

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