We haven’t seen our ECI coordinator in a few weeks so it was very nice to catch her up on everything that Eli has been up to. She observed first hand his little tantrums- you know, the ones that we were told he couldn’t possibly be throwing because he didn’t want to do something- he’s not old enough to do that. LOL I think the 2’s are gonna be real special.
Eli is so clever and stubborn. When he doesn’t want to do something he will pitch an all out fit- headbutting, screaming, throwing himself down on the floor, crying. Yesterday he cried for 15 minutes because I wanted him to hold his own bottle.
It doesn’t help that he is recovering from a virus. He has felt so puny for about a week now so he has done little to no OT at home (OT this afternoon should be super fun). All he wanted was to snuggle and be held- and who could blame him when he doesn’t feel well?
Anyway, our coordinator said this was definitely a behavior issue- the kid knows what he is doing and gave us some tips to try and redirect him. Mama’s any tips? I’ve tried just letting him CIO when he doesn’t get his way but the kid will cry for an hour with no end in sight. Our coordinator suggested siging “stop” and then directly asking him to do whatever you would like him to do instead. So far it hasn’t worked, but I don’t think he understands “stop” yet- once that comes then maybe. We will definitely keep trying that method.
Like I said, the 2’s are going to be real special.
36 more days of school and feeling overwhelmed with all that needs to be done. Really with all that is going on in the world right now- Boston, earthquakes…down to our every day problems. We live in such a broken world and I think we were all reminded of that yesterday.
I haven’t written much about Ethan Saylor, but he has really been on my heart lately. The whole issue surrounding his death is absolutely tragic and there are no words I can fathom that would comfort his family.
I know many parents in the Ds community are all thinking the same thing- that could have been my child.
There are petitions, threads, blogs, and organizations all fighting for an investagation that will hopefully bring justice for Ethan and his family. There is a shift in our community- from advocacy to activisim. Advocacy is no longer enough- we want equality and justice.
Many in the Ds community are looking to organizations that represent our children and families- like the National Down Syndrome Congress. Yesterday the NDSC really stepped in it- they suggested their posting members were being zealots- too fierce in their statements and demands for justice in this situation. Ethan lost his life 3 months ago and still we know very little about what is being done as a result of the officers negligence.
“What makes you think the DOJ is not taking action? The wheels of justice are painstakingly slow. We lose credibility the moment we act as zealots advocating for anything. All actions must be level-headed and well planned. What we need you all to do is buy a sympathy care and send it to Ethan’s mom. Let her know you signed the petition and let her know that Ethan will not be forgotten.”- NDSC
The NDSC is claiming their facebook page was hacked and that the statement does not represent how they feel, but the damage has already been done.
This is a sensitive subject but it brings up so many feelings and doubts about this world that we are preparing for our Eli. For me, I feel like the best thing any of us can do is pray, sign the petition and find change in our hearts. Raise our children up to know that being different is ok, that love is most important and that justice matters- family, community, our moral standing matters.
Ok, so this post got way more deep than I had anticipated…I guess I had more to say than I thought.
Let’s all be stubborn like Eli- stand up for what’s right with as fierce a tantrum as this little boy can throw (which is pretty impressive in my opinion).