Give up? Never

Haya, yesterday

My daughter Haya, now 25 years old, has just mastered a new sign - one which she devised independently. 

It had me and her speech pathologist snapping away elatedly with our phones to record the "miracle". She's been doing it a bit at the sessions for a while, but less emphatically than she did yesterday. 

Previously, the only sign she had made was pointing her index finger for "yes" and occasionally making a fist for "No". We taught her those signs many years ago. 

But, as I noted, the new one is her own creation and means "give me food." She only uses it when seated in her chair, wearing a bib and awaiting my feeding her. 

Normally, we give her a spoon and she feeds herself so there's no need for this new sign. She only uses it when I'm feeding her - which I only do during the speech therapy session. 

So it's an appropriate and clear sign. Here it is on the right in a photo I snapped yesterday.

Another milestone reached this week was the start of the higher dose of her newest med, Fycompa. She went up from 2 mg. pills to 4 mg. pills for the first time.

I have a request. Please remember these milestones when you next read Aleh's or ADI's disingenuous propaganda about "severely disabled" children requiring institutional care to achieve their "fullest potential". 

I named both organizations - Aleh and ADI - because I am still befuddled as to their identities. Are they connected to each other? Are they separate but co-existing? Are they at war?

 

I have messaged the ADI Facebook page with that query but there's been no response till now. 

Hmmm. Predictable.