Wednesday 11 September 2013

long is the road.

Yesterday was a hard day.  M's first day of pre school.  It went almost exactly as well as I feared.  I walked in with cautious optimism and left with a purse full of snotty kleenex.

Let me preface this post by saying two things.  First, I love and deeply appreciate ALL my people. regardless of whether you are a close personal friend or simply a facebook acquaintance, your support of my family through words, actions or thoughts is immeasurable and something that truly helps me get through a lot of my days.

Second, it's important to note that EVERY human with ASD is different (in so many ways) than every other human with ASD. period.  It is simply impossible to characterize or compare one ASD experience with another. Just as it is impossible to compare a typical experience with an ASD experience.

And so, having prefaced that, I need to talk about our reality again. OUR specific ASD reality.   I know I have talked about Mylo being non-verbal in other posts and the difficulties navigating that world. What I now realize I haven't really talked about in my blog or to many people who actually know us, is M's inability to understand what we are saying.  I say inability, but I don't know that to be true.  perhaps he does understand us, but is so far ensconced in his own world that our words don't register.   Whatever the case may be, we can talk and request and discuss until we are blue in the face and he does not hear or respond to us in any way.

What do I mean exactly?   If I ask Mylo simple everyday questions like, where is mommy?   Or can you please bring me your shoes?  Or where ARE your shoes for that matter......he doesn't respond, he doesn't pay any attention to us at all.  He never has and that doesn't appear to be changing. For example,  I have no idea if Mylo knows what or where his hands are, if he knows what a cat is, or what or where his daddy is.   Can you imagine for a moment how difficult it is to have a child who can not communicate with his voice but also has no real receptive language abilities?

How do I make him understand that pre school is not a punishment, that he doesn't need to scream and bite and try to escape?  For now, the answer is, I can't.  I can only hope you are all right in saying it will get better with time.  But, and here's kind of the main point of my post,  please do me a favour friends, in trying to make us feel better about days like this, try your best not to compare, normalize or minimalize our experience(s),  it just makes our reality that little bit harder.   Spoken with gratitude and only love.


  1. Kate, Sam and Mylo sound very similar. I don't know if Sam knows that her hands are called hands, or that she knows body parts or colors. She would never get something or point to something if I asked her to. I think that she understands so much more than she can show, though. I know how frustrating that is, believe me. It's only in this past year (and she's now 5 1/2) that she will at times respond to requests. She will sometimes get up and come over when I tell her it's time to go somewhere. And sometimes she'll give a kiss or a hug when we ask her to. That's about it....but it's been a really big deal in our house! I hope that Mylo starts to enjoy preschool in time. I hate that you're going through this. I wish we lived close and we could have coffee (or a drink) now and then. (((((Kate))))))

  2. This comment has been removed by the author.

  3. I can empathize. I don't ever mean to compare Mylo to Jasmine and I hope you don't think that I think they are the same, I know they are very different. In any post I've ever written to you I guess I am just trying to let you know you are not alone by sharing with you my experiences in parenting a high behavioral child with ASD! I will try harder not to write about Jasmine when responding to your posts so that it doesn't seem I am comparing! My heart aches for you, I know how hard it is *tears* and I pray that for your family it does get better because for ours it gets harder and harder each year :(

  4. <3 I wish we lived closer too Christine. I hate that you know what I am talking about but kind of love that someone does get it. mucho love and hugs to you and Sam. and thank you for this response, it means more than you can imagine. <3

  5. Thank you Kitty! Being able to share your feelings and state your wishes while at the same time teaching us all something is not only courageous but very admirable. You teach me something new with every blog and every FB post and for that I am truly grateful and feel blessed to know you. Love and hugs! T

  6. Kate... You are beautiful and strong. It is so important that you share your experience with us... with the world. There is so much that we cannot comprehend, and it will benefit us all if we can catch glimpses of understanding from your experience. WE need this, and especially our Children need this. Pearce has an ASD child in his class and we have had discussions about his perception of who this child is and how HE feels and interacts. I draw upon the experiences you've freely given to build a framework of understanding and compassion that he can draw from... maybe if we all do this it will pave a road with fewer bumps, obstacles and misunderstandings for precious unique kids like your little M. Love You *hugs*