How do I explain?

I witnessed a tough moment the other day – an interaction between my kiddos…..and it broke my heart.

Boston requests a drink or food with PECS (a photo of his cup or bowl.) He either pushes the button under the photo and it speaks the words for him “May I have something to drink please?” or he will take the photo down from the wall (it is held up by velcro) and bring it to me (or any adult who is nearby.) The other night he took the photo of his cup down and took it to Brooklyn who was sitting in her chair. He tried to get her to take it from him, once, twice, three times, maybe more – even trying to hold his hand OVER her hand to “make her’ take it. He became increasingly frustrated that she was not helping him.

I can’t imagine the total frustration in BOTH of them. I assume  Brooklyn would get up and help him get a drink if she could! (ok maybe she would be a bratty older sister and not help him, who knows?!?!) SHE was probably so irritated with his persistence with that stupid picture of the cup! And I am sure HE was so frustrated that his sister was not helping. I hated the whole scenario really.

How do I explain Rett Syndrome to a six year old little boy with Down Syndrome and Autism – you can’t, there just isn’t a way. There just isn’t. I told him that sissy loves him SO MUCH but she can’t get up and get him a drink and that mommy would help him. I told Brooklyn that I am sorry Boston was insisting she help – and poking her with the photo card. I do not know if either of them cared for my explanation of the situation.  This is one of those times that just stinks.


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