See What I Mean? ☺️

We went from random unusual sounds and NO speech at all, to words and not only single words, sometimes whole phrases and sentences! Today she came to me and proudly pointed at her ears while shouting, “Ee-yors.” I responded, “Yes! Ears!” Who cares about pronunciation right now when words are so new!?

Caught her running to my room…

And after she entered, I was rewarded with more!

And “Let’s go!” Not sure where to! Her first time saying that.

What is so exciting to me is how she herself seems to find her ability to speak amusing and amazing! She just says random words too with joy and abandon! It’s like the words ‘taste good’ to her. It’s lovely. It really is.

But it’s a privilege I can’t post elsewhere. I have an acquaintance who has my number and their autistic six year old is not talking (yet.) My girl is four years old. They’ve been everywhere for help and he has been going to special schools (Due to aging out , he’s actually leaving the one we wanted but has no space for her.)

I know how it hurts -for a lack of a better word- when someone you were walking with suddenly runs ahead and leaves you behind leaving you even more isolated, even when you know they have ‘severely autistic’ (Neurologist’s words, not mine) challenges to deal with, like behaviour that’s inexplicable or the insatiable desire to keep eating. I can’t do that to her, I can’t throw our growth in her face when she’s wishing for it for her child. So, I share my surprise here. I pray it continues. I hope it progresses till she can tell us what’s in her heart, her mind, what bothers her, and what she likes. When we go out, to have her tell us WHY she’s screaming would be such a blessing. To know what makes her uncomfortable would help us reduce the discomfort, protect her from the places or smells or sights, and create more safe spaces for her. Oh, that would be such a lovely thing to happen.

Her twin-she will scream and cry. But then she will tell us that she doesn’t want a certain song to start playing until she’s there in front of the TV instead of with me in the bedroom. We now know to have her sister call her if they’re about to play music so she’s there. We know why she’s crying.

What a dream come true if the same could happen for her sister.

Keeping hope alive and VERY grateful for where we are today.

Alright no. I couldn’t keep it in. So I hid the mom instead. I post a bit about AS (Mostly what it does to others. Only two people know I’m dealing if with digestive side effects from Enbrel .) It’s only fair to post a bit of my good news.