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.
They have have so much to “say”